Straight from Our Hearts

Loving Caleb

2011-11-22T15:57:00.001-05:00

Kim and Caleb, October 2011

ByKim Harris

Hello,worry; welcome back. This is exactly how I felt when I got pregnant. I was alwaysa worrier and for me, pregnancy was no different. I would call my mom throughoutthe day, crying. I was worried. What’s new?

WhatI worried about was so trivial at the time, but I didn’t know it. To me, they werelegitimate fears: Would I love my child enough? Would I know what to do with a boy?What if I didn’t bond with my child the way a mom is supposed to? What if I becameangry at him when he took my sleep? What if I couldn’t handle motherhood the wayI thought I could?”

Neveronce did I ask, “What If he’s not healthy?” I assumed he was. Every appointmentshowed a good, strong heartbeat. I was in my 20s and in good health. That meansI’m guaranteed a healthy baby, right? I soon found out how very wrong I was.

Kim with Caleb, shortly after his birth.

OnDec. 22, 2009, my life was forever changed. Caleb joined this world at 10:06 inthe morning. Instantly, I was in love. I immediately felt my world change. I knewin that second he was given to me, that I had a gift, a responsibility, and I woulddie for my child.

Iwas overwhelmed with emotion. I remember my parents being there, and a great friendhad visited. I let everyone hold Caleb as much as they wanted, and I just kind oflaid back and took in the fact that I was now a mom. I figured I would let everyoneenjoy him now, and I would get him all to myself in two short days when we weredischarged and at home. Sometimes, I regret that. I wish I would have held him more,and snuggled up with him more, but I had no clue and had no way of knowing whatwas to come.

Idecided early I wanted him in the room with me all night. My heart was so full oflove and I just wanted to fall asleep knowing my baby was next to me, safe in myroom. I didn’t want him in the nursery. Around 10 or 11 p.m., I had Caleb in thebed with me and I was studying every part of him. He looked just like his dad. Hewas so peaceful. He was a little purple, but I figured every newborn looked likethat. He was perfect and my life felt complete.

Ihad been awake for 36 hours and it was finally taking its toll. I realized I couldn’thave him in the room with me. As much as I tried to fight it, I had to call thenursery to come get him. They were my saving grace in more ways than one.

Ifinally drifted off to sleep, and around 2 a.m., a nurse woke me up, telling methere was something wrong with Caleb’s heart, but they weren’t sure what. A lotof things were thrown at me and I can’t remember it all, mostly because of lackof sleep, pain relievers and pain. I remember my husband telling me it wasn’t thatbig of a deal. That worry crept back into my head; I said, “It has to be bad ifthey’re rushing him to another hospital.”

Aboutan hour later, we were allowed to see him before he was rushed to Shands Children’s Hospital inGainesville, a hospital that at that point, I had never even heard of. Caleb was in an incubator and now he looked likesomething was wrong with him. I don’t know if the wool had finally been taken offmy eyes but right then and there, I knew something was wrong and he no longer wasmy “perfect” baby.

Theydischarged me a day early to be with Caleb the next day. We went home, got changed,and off we went to this hospital we knew nothing about. We went to the Shands’neonatal intensive care unit and saw Caleb. It was terrifying. He was on a ventilatorand had monitors everywhere. The beeps were too much. I wanted someone to tell mewhat was going on. I felt completely alone, although I wasn’t.

Caleb, while he waited for a heart.

Dr.Gonzalo Wallis met us in a conference room where he told us about Caleb’s diagnosis—several congenitalheart defects that make up hypoplasticright heart syndrome (the right side of Caleb’s heart did not completely formduring fetal development). Dr. Wallis assured me that nothing I did while pregnantcaused this. I knew that in my heart, but I still couldn’t help but feel guilty.I remember Dr. Wallis and my uncle, a pediatric nurse, said I could be thankfulCaleb didn’t have hypoplasticleft heart syndrome, because thatwas so much more dangerous. “Finally,” I thought, “some good news.”

Caleb with one of his nurses.

Welearned Caleb would need open-heart surgery in a couple of weeks. I felt awful formy child. He’s so tiny and no one that little should ever have to go through somethingthat serious. I knew it had to be done, though, and as much as I hated it, I understoodand gave consent.

OnJan. 7, 2010, before his surgery was to take place, Caleb had a heart catheterization(to make sure everything was just as it looked on his echocardiogram).I went down with them to take Caleb to the pediatric “cath” lab. Right before Calebwent back, he started to cry heavily, and he was swelling. His eyes were swollenand he turned even more purple. I kissed him through my tears and while they tookhim in, I turned to my family and broke down in tears. I knew he was sick and Icouldn’t do a thing for him. It was unsettling.

Theresults came back from the heart cath: his coronary artery had sinusoids,or, as it was explained to me: pressurized blood vessels. Shands’ congenitalheart surgeon MarkBleiweis told me that if the first surgery was attempted, Caleb would have aheart attack and die. Our only other option was a heart transplant. I felt my worldend right then and there. I knew nothing about transplants and to hear everythingI was hearing was horrible.

Aftermeeting with Caleb’s cardiologist and surgeon, I couldn’t take hearing anythingelse from anyone else, so I left alone and wandered the halls, crying. All the mundaneworries I had before seemed so pointless now. All I wanted was Caleb to be healthyand home.

Iremember listening to a nurse talk on the phone about buying a new house and howexcited she was. It was hard to hear people’s lives going on, when my life was ata standstill. It was like every person around me was moving and I couldn’t move.I wasn’t able to, as much as I wanted to. It were as if someone were holding myhands behind my back and parading me in front of Caleb, telling me to help him,but I couldn’t. I was helpless in more ways than one.

Isat in the middle of the 3^rd floor at Shands and cried harder than Ithink I have ever cried in my entire life. I didn’t care about all the stares Iwas getting. I didn’t care if I looked like a mess. My world was crumbling beforeme and I just wanted to curl into a ball and die.

Thenext three months were a blur. There were days when I had this overwhelming senseof confidence and strength, and I just knew I could do this. I would laugh withthe nurses, with whom I had become close. I even looked forward to going to the3^rd floor.

Thenthere were days when I was in a dark place. I wanted to throw my hands up and say,“I’m done.” I would see parents come and go from the NICU with their babies in tow,or I would hear them cry out when they were told their baby had to stay four daysfor jaundice. I would get angry. I wanted them to know how much I would love itif jaundice were the only reason we were in the NICU.

Ibegged the nurses to move me away from everyone else because it was too hard. Iwas becoming angry and bitter. Toward the end of Caleb’s stay in the NICU, he tooka turn for the worse. He couldn’t eat by mouth anymore. He was fed everythingthrough a nasogastricfeeding tube. He couldn’t tolerate his meds anymore. The tissues around hisbones were inflamed. He was swollen all over. He didn’t look like my child. I couldn’thold him. He would squirm and cry in pain when we changed his diaper.

Caleb, just after open-heart surgery.

Thedoctors met and decided they couldn’t wait anymore and they were going to go aheadwith the “bidirectionalGlenn,” which is the second stage of the three stages of surgeries (thefirst is the Norwood and the third is the Fontan).

Talking to Caleb after surgery.

Theytook Caleb back to the operating room on March 16, 2010. I couldn’t watch them wheelhim away again; I stayed at the Ronald McDonald House. I didn’t want to tell him“goodbye.” It was too gut-wrenching. I wanted to remember him from the night before,when he actually had a good night. It was like he knew the next day, he was havingthe surgery and he would start feeling better.

Thedays after his surgery were tough. He was in a lot of pain. It had been so longsince he had eaten by mouth, he forgot how to do it. He went through withdrawalsfrom the pain meds, he got an infection at his incision, and he had a blood clotin his leg. It was a roller coaster.

He stayed in the Shands’ pediatric intensive care unit for five weeks recovering fromhis open-heart surgery. He went home with a feeding tube. All of his meds and formulawere to go in there. He started having violent episodes of vomiting. Seriously,it was like something out of The Exorcist.They determined he had gastroesophagealreflux, a severe type of acid reflux, and started him on meds for it.

DuringCaleb’s recovery, I watched a new baby emerge — one who smiled, giggled and cooed.I hadn’t really seen or heard that before. He was a quiet baby in the NICU. Nowhe was getting a personality and I loved every minute of it. My own personalitystarted coming back. I noticed that once he started changing, so did I. My strengthwas back. My sense of humor was trying to come back. I felt more like me than Ihad in a long time.

WhileCaleb was in the NICU, I remember meeting Dr. JayFricker, chief of pediatric cardiology at Shands/University of FloridaCollege of Medicine; he is now Caleb’s cardiologist. I thought he was very seriousand needed to laugh more. Obviously, the NICU isn’t a place for laughter or joking,but I told myself that once I was out of there, I was going to make him laugh. Itwas my goal and my day would come.

OnApril 19, 2010, just three days before Caleb was 4 months old, he finally came homewith us. It was a bittersweet moment. I was beyond elated to finally be a mom. Ihadn’t felt like one yet because Caleb’s nurses did most everything I would havedone if we were at home. At the same time, I was scared beyond belief. “What ifsomething goes wrong”? I don’t have the comfort of a nurse right beside me.

Theride home was surreal. I think we drove 10 miles per hour under the speed limit.It was odd to see this tiny person next to me in the car and know all he had alreadybeen through, and now we were going home to try our hand at “normalcy.”

Thefirst night was a rush I can never explain. It was amazing just to sit at home andwatch TV with my husband and dogs, and with my child in my arms. I never thoughtthat day would come. It filled my heart with the love I remembered feeling fourmonths before when Caleb was born.

Atour first appointment with Dr. Fricker after Caleb was discharged, I told himhow much I hated how he, the nurses — pretty much everyone — called me “Mom,” insteadof by my name. My name is not Mom. I understand they have so many patients andfamilies that it’s impossible to remember everyone’s name, but I feel like theonly person who’s allowed to call me Mom are my kids, and these doctors andnurses are absolutely not my kids!

Nowit’s a running joke between Dr. Fricker and me. We saw each other at a conferencerecently, where we both wearing nametags. Caleb had an appointment thefollowing week and I told Dr. Fricker I was wearing my nametag so he would besure to call me “Kim.” He laughed! It was one of many times since Caleb hasleft the hospital that I’ve made Dr. Fricker laugh. He’s done well calling meKim, with only a few slip-ups here and there, which I have forgiven.

SomethingI remember Dr. Fricker telling me is that I have one of the best personalitiesof any of the parents he’s met. He said I always have a smile on my face. Thathasn’t always been the case, but watching Caleb thrive and knowing how he has changedmy life has completely changed my outlook on life. I don’t worry nearly as muchas I used to about the trivial things.

Caleb, today. A funny, smiling, beautiful little boy.

Istill worry about Caleb’s health, but I try to live every day for today and nottomorrow. I think back on everything we went through, and if I were given the opportunityto do it all again, knowing what I know now, I would do it all again without changinga thing.

My“heart baby” has given me a new purpose to life and a new joy I never expected.I’ve met amazing heart families and doctors who have given me hope and strength,as well as lifelong friendships that mean the world to me.

Rightnow, Caleb is in his crib babbling away and saying “mamamamama.” It just feels righthearing that from my little miracle. Nothing can compete with that. He is doingamazing! He’s walking, talking and eating like a champ (the feeding tube was takenout in November 2010).

Wehave another surgery soon (the Fontan procedure) and possibly, one day, even a hearttransplant. But I know now, I can handle this, and more importantly, so can Caleb.This “mom” thanks the wonderful people at Shands who did, and continue to, go aboveand beyond for us We have an amazing team and support system around us that reallymakes a world of difference. Thank you forgiving me Caleb back to me.

Talking with Bill Coon

2011-10-29T14:30:00.003-04:00

Almost a year after reading SWIM:A Memoir of Survival and corresponding with the author, Bill Coon, byemail, Facebookand Twitter, I finally got to meet him inreal life in mid-October at the American Heart Heroes Regional FamilyConference in Gainesville, Florida. He was the featured speaker at theconference, highlighting key messages of surrounding yourselfwith people who support you, setting goals, digging deep and fighting for your life,advocating for yourself, and taking good care of your health.

Born in 1989 with hypoplastic left heart syndrome, Bill is atwo-time heart transplant recipient. At 3 weeks old, he was the fourth infantheart transplant performed in the Midwest, and the eighth in the nation. In2009, he went into heart and kidney failure and suffered from cardiactransplant vasculopathy. In late 2009, he received a new kidney and hissecond heart. Since his recovery, he has been inspiring those with chronic andcritical illness to keep fighting. He is also a living testament to theimportance of organ donation.

During the conference, we spent some time Talking with Bill.

Hummingbirds and Heart Heroes

2011-09-06T11:01:00.000-04:00

Last week was a sad one for Broken Hearts’ families. We lost two sweet children to their congenital heart defects. Two-year-old Caleb Adamyk and 11-hour-old Tristin.

Over the weekend, a hummingbird flew toward my dining room window, hovered, looked inside and then flew away. We do not have hummingbird feeders, and I have never seen a hummingbird at my house before.

Later, I remembered a passage in Bill Coon's book, SWIM: A Memoir of Survival, about how he saw a hummingbird for the first time in his life, and that's when he knew -- despite his failing heart -- he was eventually going to be OK.

Thanks to Google and Yahoo, I learned this about hummingbirds:

“This energetic little bird migrates 1,800 miles from the eastern United States to spend winter in Central America. This distance alone indicates the hummingbirds’ stamina and perseverance. They can show us how to go the distance ... Hummingbirds have the advantage of seeing things from all angles and can show us how to expand our perceptions … The hummingbird serves to remind us of the beauty and wonder of the world. While their speed and sound may sometimes startle us, they help pull our attention out of the mundane so that we can acknowledge and appreciate the beauty of creation.”

Caleb Adamyk
March 20, 2009-Aug. 29, 2011

My hummingbird was a Godwink from Caleb and Tristin, two boys who defied odds by being here for the time they were here. Persevering and going the distance. Expanding our perceptions. Reminding us of beauty and wonder, and pulling our attention away from trivial matters to focus on what is important — focusing on faith, hope and love.

Remembering Caleb and Tristin, and all of our angels today, and keeping their families close to our hearts.

Have You Loved Your Scar Today?

2011-07-22T11:44:00.000-04:00

Broken Hearts of Florida is thrilled to partner with Rock Scar Love and Amy Tippins!

An amazing woman with a big scar and a bigger heart, Amy and her RockScar Love inspire passionate lives through clothing. RSL celebrates sexy scars, the lessons they teach us and the strength they create.

When you shop from the Broken Hearts of Florida affiliate page, RSL donates 10 percent of the proceeds to Broken Hearts. We, in turn, use funding to support Broken Hearts programs and services, such as our monthly potluck dinners for family and friends, nonperishable food for our Food from the Heart Pantry at the Shands Children's Hospital's pediatric intensive care unit, our annual May Day Picnic, and our Regional Forum on Congenital Heart Disease.

Help us help our families! Buy stuff! Plus, Amy's designs are so cool! Read more about Rock Scar Love and Amy Tippins. Then, GO SHOPPING!

Congenital Heart Families: Extraordinary People

2011-07-15T11:29:00.000-04:00

It’s an honor and delight to be part our heart families’ lives. Even when there is fear, crisis, turbulence – they hold fast to their faith.

It is an extraordinary privilege to witness the love, hope, courage, compassion and selflessness that our parents and children demonstrate in their everyday lives.

Today, in particular …

Rachel and Emily are awaiting new hearts.

Ramsey is fighting rejection.

Little Caleb is fighting for his life …

Please say prayers for, think positive thoughts about, get your mojo on for, and/or send healing vibes to these heart warriors, and hold them and their families in your hearts.

Caleb


Ramsey

Rachel

A Picture That Paints a Thousand Words

2011-05-16T22:26:00.000-04:00

Nels Matson, left, and my son, William, pull down the collars of their shirts
and show each other their scars from open-heart surgery. They both have
versions of partial anomalous pulmonary venous return. Nels' heart was
repaired when he was 4; William when he was 2.

At school tomorrow, William is supposed to bring pictures of himself and tell his class about them. Do you know what pictures he wanted to bring? The ones that tell his heart story. Wow! Lately, especially, he's been so reluctant to tell people about his heart, even hiding his scar.

But I think the Broken Hearts' May Day Picnic helped him get past that. He got to see dozens of other kids, some with much more noticeable scars than his own, running around bare-chested, oblivious and proud of their bodies. At first, he wouldn't take off his T-shirt to go down the slide. Later, I couldn't get him to put his shirt back on.

I think one of the biggest highlights, though, was meeting Nels Matson (athletes4heart). I had tried all day to get William to talk to Nels but he was having nothing to do with it. Toward the end of the day when the crowds had thinned and William had pulled himself up to a table, munching on left over chips, Nels slyly sat at the table at William's height and started talking to him about William's three beloved bicycles. The rest, as they say, is history.

Nels and William have similar heart defects -- different versions of partial anomalous pulmonary venous return. While heart defects aren't rare, this particular one is rare, and William's version (scimitar syndrome) is even rarer. So Nels was talking to William about his surgery and told William that he had had surgery, too, and that they both had scars. And with that ... they pulled their collars down and showed each other their scars!

This picture paints a thousand words!
Thank you, Nels, for helping my son see he's not alone.

Three Hearts, One Battle

2011-04-26T16:05:00.008-04:00

UDPATED April 29, 2011

The piece aired on Thursday, April 28. ABC27 and Anne Imanuel did a great job! Thank you for sharing an inspirational story and raising awareness of congenital heart defects.

You can find the story here on the ABC27 website.

***********************************************************************

Remember last month, we wrote about "Those Massey Boys"?

That blog post caught the attention of WTXL-TV, ABC 27, Tallahassee, and they decided to do a story about the Masseys! Thank you, Anne Imanuel!

I can't wait to see the whole piece! But in the meantime, here's a sneak preview that ABC 27's Creative Services put together to promote "Three Hearts." (You can also find it on our YouTube channel.)

"Three Hearts, One Battle"

Thursday, April 28, at 6 p.m.

WTXL-TV ABC 27

Food from the Heart

2011-04-25T15:54:00.011-04:00

New Food Pantry at Shands PICU

Families whose kids are patients in the pediatric intensive care unit at Shands Children's Hospital have a new source of FREE small meals and snacks -- Food from the Heart, a pantry of healthy snacks and small, quick meals, provided by Broken Hearts.

Food from the Heart snacks are available to any family staying in the PICU, regardless of diagnosis or financial need. The only requirement to request a trip to the pantry -- hunger and a desire or need to not leave the PICU floor!

Families simply tell the Charge Nurse or the PICU Social Worker that they'd like to select a snack or small meal from the Food from the Heart Pantry.

Thank you, Fidelis Omicron chapter
(Tallahassee, Florida) of Alpha Delta Kappa,
for our first batch of goodies!

Our first batch of goodies came from the Fidelis Omicron chapter (Tallahassee, Florida) of Alpha Delta Kappa, an international honorary organization of women educators. My mother, Maryjane Thurston, a very-longtime member, graciously arranged this. I was able to tell the group about Broken Hearts and they brought items for our pantry. They were so generous, we were able to fill a large laundry basket!

We are so excited to work with the Shands PICU to provide this new service to heart families and other families whose children are in the hospital.

Now that we have the pantry -- we are accepting donations for it! We ask that items are nonperishable and nutritious (or at least mostly so). We want to provide families with food that will nourish them and boost their energy.

Suggested items for our
Food from the Heart pantry:

Healthy Choice Fresh Mixers
Whole Almonds (plain, individual packets)
Raisins (individual packets)
Granola Bars (Kashi, Nature Valley, Quaker)
Dark Chocolate (individually wrapped)
Pretzels (individual packets)
Laughing Cow Cheese
Low-sodium Soups (in microwaveable containers)
Hot Teas and/or Cocoa
Easy-Mac
Trail Mix (individual packets)
Applesauce (original, no sugar-added)
Fruit cups (such as Del Monte)
Juice Boxes

For more information or to donate, contact:
Broken Hearts of Florida at brokenheartsinfo@brokenheartsofthebigbend.org.

Those Massey Boys

2011-03-16T16:28:00.000-04:00

I stepped away from my desk for a few minutes. When I came back to my computer, this picture was up on my screen. I LOVE this photo. I love these boys. Kyle, Kasey and Kevin are the sweetest, craziest, funniest boys. They have big, generous, loving hearts.

They're known around these parts as "The Massey Boys." Kyle, Kasey and Kevin are almost 17. All three were born with serious, life-threatening congenital heart defects. Their parents, Keith and Elaine, did not know before their triplets were born that they had tetralogy of Fallot, a group of four congenital heart defects -- pulmonary stenosis, overriding aorta, ventricular septal defect and right ventricular hypertrophy.

The Massey Triplets were born in South Georgia and airlifted to Shands Children's Hospital in Gainesville, Florida. Shands/Children's Miracle Network keeps their story, along with an adorable picture of the triplets as toddlers. The doctors at the University of Florida have written about them; I mean, they're identical triplets with nearly identical heart defects. How often does that happen anyway?

Imagine that. Imagine raising identical triplet boys who have nearly identical heart defects. Triple the worries. Triple the anxieties. Triple the surgeries. And? Triple the victories. Triple the accomplishments. Triple the laughter. Triple the joys.

Those Massey Boys fight, they pick on each other, they joke and they play pranks. They laugh and take care of each other. They're talkative and delightfully noisy. Keith and Elaine have raised rambunctious, goofy, thoughtful, loving kids. And they've done it with amazing grace, calm and composure. The boys -- the family -- are involved in their school, their church, their local community, and the congenital heart community. They are proud, confident young men. They're so good to our younger heart heroes.

Every time I see this photo, this is what I think about. Thank you, Kyle, Kevin and Kasey, for being you. Thank you, Keith and Elaine, for sharing them with us.

McKenzie's Lesson: Make the Most of Every Moment

2011-02-25T09:35:00.009-05:00

By Jennifer Bailey

Three years ago we were blessed with the best gift of all. We were given a beautiful little girl. She weighed 7 pounds, 11 ounces and was 21 inches long. Feb. 25 is McKenzie’s 3rd birthday and even though she is not here to celebrate, we are still celebrating her life and the time we had with her.

We are so happy to have had 25 months with her. She smiled and was happy more than you could imagine and dealt with every medical issue like it didn’t even bother her, playing and smiling through them all.

She loved her birthday parties, which we held on the 25th of every month. She loved seeing the people come see her and especially the balloons! McKenzie loved balloons! She loved to play with them and hit them and listen to the sound they made.

As we celebrate her 3rd birthday we ask you all to take a moment and think of her. Think of something you remember about her -- her smile, her big eyes, anything, even if it is just knowing her through her pictures and following her story. Her story has touched so many lives and we ask you all today to remember her story.

Remember her fight and her lessons she taught all of us: Make the most out of every day you have, remember we are only guaranteed this moment. Nothing is for sure for the future, so make the most out of every moment you do have.

Congenital Heart Disease Books -- SWIM: A Memoir of Survival

2011-02-11T20:27:00.054-05:00

By Karen Thurston Chavez

I confess: when I first opened up SWIM: A Memoir of Survival, Bill Coon's self-published journal about his heart and kidney transplants, I was skeptical.

But then. Well, damn.

Bill’s memoir is raw, stark, brutal and stunning. His story is remarkable, mind-blowing and incredibly inspiring.

Today, it seems like everyone is described as heroic, inspirational, courageous, a true wonder. Bill really is.

He was born in 1989 with hypoplastic left heart syndrome (HLHS) – the left half of his heart was severely underdeveloped. Back then, the survival rate for babies with HLHS was near zero.

Some babies (even back then) had the option of undergoing a three-stage surgical repair (Norwood procedure almost immediately after birth; Glenn procedure at 3 to 6 months of age; and the Fontan procedure at 3 to 5 years of age). But Bill was too sick. His only chance of survival was a heart transplant. The same day his parents were considering taking him off life support, a heart that matched became available.

When Bill had his heart transplant at 3 weeks old in May 1989, he was only the fourth infant to have a transplant in the Midwest, and only the eighth baby in the nation to undergo a heart transplant. Except for his first 21 days of life, Bill has never lived with his own heart.

In the world of congenital heart disease, Bill is a major piece of history, of victory.

I don’t have any first-hand, personal experience with transplants. Through my work with Broken Hearts, though, I have come to know many adults and children who are transplant survivors. I’ve watched families wait days for the right match, and watched as others waited weeks, months, a year. A family I know left the hospital without their teenage daughter; she died eight months into her rocky, painful and courageous wait.

No one I know has ever painted the wait for transplant a fun, pain-free picture. But neither have they illustrated it as darkly or as deeply as Bill’s portrait.

The book’s opening summarizes Bill’s childhood.

“I lived a pretty sheltered childhood up until I was 5 years old,” Bill says. His transplant medications made his immune system weak. “I have no memories as a kid of ever leaving my house at all.”

But Bill had three cousins and his younger and older siblings as playmates, and he describes his childhood as “colorful, carefree and filled with ignorant bliss.”

Life was good … until his sophomore year of college. He began experiencing wrenching pains in his abdomen, struggled to breathe and was exhausted most of the time. Finally, on June 7, 2009, he couldn’t ignore his symptoms any longer and his mother took him to the emergency room.

“My life of good fortune and ignorant bliss had come to an abrupt end,” Bill says. “I didn’t know it then but my journey had just begun. I was about to enter the darkest period of my life; a period in which I experience a great deal of pain, heartache, depression, anger and sorrow.”

And that’s where his story really begins.

This is not a book Bill sat down afterward and wrote, rewrote, polished and sanitized. It’s his personal journal, written along the way, in the moment. Moments when he was grateful, angry, bitter, happy, determined, sad, willful, groggy, drugged -- and that might cover just one day.

Bill’s depictions are gripping and painful, and they're often laugh-out-loud funny. No matter his mood or condition, his feelings and thoughts are compelling.

If you want to know Bill's story, and you do, you'll have to read his book.

Learn more and connect with Bill Coon:

This one's for you, Steve!

2011-02-07T08:54:00.000-05:00

Steve Catoe
The Funky Heart

As Congenital Heart Defect Awareness Week (Feb. 7-14) gets off to roaring start, we're missing more than ever, one of our most influential, level-headed, just-the-facts-and-get-them-straight-please, beloved congenital heart advocates, Steve Catoe, affectionately known as The Funky Heart.

Among his countless posts that inspired and educated us, Steve also loved taking songs and rewriting their lyrics to include something about congenital heart disease. One of his last renditions was "South Bound and Down," about attending a HeartWalk in Atlanta. He wrote a number of others, including "Saving Grace," "The Way It Is," and "CHD in the USA." He used names of songs or lines from lyrics in his headlines or to lead off his blog posts.

In Steve’s spirit and to remember him this special week, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (here's the tune) and done something Steve might have done this week — rewritten the lyrics for CHD Awareness Week!

Here’s to you, Steve!

(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)

It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

It’s the most – most vital week of them all
With those CHD messages and advocate meetings
When friends are on call
It’s the most-most vital week of them all.

There’ll be parties for vic’tries,
Lighting candles for memories, and
Telling our stories on shows
There’ll be scary heart stories
And tales of our glories of
Triumphs we’ve made as we go.

It's the most wonderful week of the year
There’ll be reasons for sharing
Our hearts we’ll be baring
For our loved ones so dear
It's the most – most heard week of the year!

It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

Congenital Heart Disease

2011-02-04T13:11:00.003-05:00

It’s the Most Wonderful Time of the Year!

To Raise Awareness of Congenital Heart Defects/Disease

So many great congenital-heart-defect awareness-raising things are happening here in Tallahassee this week and next week!

Tonight at 11 p.m. — immediately following Barbara Walter’s special, “A Matter of Life and Death,” at 10 p.m. on your local ABC channel — one of Broken Hearts’ very own, Ramsey Brown, will be featured on a segment our local ABC affiliate, WTXL.

Ramsey a few days post transplant.
Who looks that great after transplant?
Ramsey does!

Ramsey will share her story about growing up with congenital heart disease and her recent heart transplant at Shands at the University of Florida.

On Sunday, WTXL will interview Broken Hearts about its upcoming Open House on Tuesday, Feb. 8. Join us for our Open House and learn more about congenital heart disease, available resources for families and about Broken Hearts! Since its inception in June 2006, Broken Hearts has grown from its two founding families to more than 150 families across Florida, South Georgia and a few spots across North America. (Come over to Facebook and LIKE us!)

What events do you have going on during this Most Wonderful Time of the Year?! Tell us about them in the comments section below.

You know, as excited as we are about all that’s going on, we are missing more than ever one of our most influential congenital heart advocates, Steve Catoe — our Funky Heart. In Steve’s spirit and in his honor, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (I’m sending you to a neat video, featuring the original song.) and done something Steve used to love doing — rewriting the lyrics to make them CHD/heart-related!

Here’s to you, Steve!

(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)

It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

It’s the most – most vital week of them all
With those CHD messages and advocate meetings
When friends are on call
It’s the most-most vital week of them all.

There’ll be parties for vic’tries,
Lighting candles for memories, and
Telling our stories on shows
There’ll be scary heart stories
And tales of our glories of
Triumphs we’ve made as we go.

It's the most wonderful week of the year
There’ll be reasons for sharing
Our hearts we’ll be baring
For our loved ones so dear
It's the most – most heard week of the year!

It’s the most wonderful week of the year.
With our kids boist’risly yelling,
And everyone telling you,
“Just be a dear,
“And spread CHD stories all the year.”

A Cure for Heart Defects

2010-12-31T11:56:00.001-05:00

Before his unexpected death on Nov. 29, Adventures of a Funky Heart author Steve Catoe wrote about making a plan to cure heart defects. As we close out 2010 and open 2011, I can't think of a sweeter wish, a better challenge, a greater goal. Here's a link over to Steve's blog.

Here's to a successful, productive and Happy New Year!

We Pray for Children ...

2010-12-09T14:27:00.000-05:00

In June 2009, Broken Hearts of the Big Bend held a gathering in Tallahassee called “Unite for Eliza.” We gathered to pray for the life of Eliza Huff, who was then awaiting a double-lung/heart transplant at Shands Children’s Hospital. At the request of Eliza’s mother, Sara, Eliza’s Aunt Mindy (Sara’s sister) read this poem at our gathering.

That was the thing about Sara and Eliza, and their family. No matter what was going on, it seemed, they were always watching out and praying for others in trying or tragic circumstances and situations. I can say that about so many of our parents, and especially Sharon, Jennifer and Ashley, Dawn and Tim, KimH. They, including Sara, still reach out to others in need.

Eliza died Dec. 26, 2009 after long, hard-fought battle for her life. I still pray for Eliza. And, I Pray for Children. This poem has stayed with me ...

We Pray for Children . . .
By Ina J. Hughes

We pray for children
    who sneak popsicles before supper,
    who erase holes in math workbooks,
    who can never find their shoes.

And we pray, for those
    who stare at photographers from behind barbed wire,
    who can’t bound down the street in a new pair of sneakers,
    who never “counted potatoes,”
    who are born in places where we wouldn’t be caught dead,
    who never go to the circus,
    who live in an X-rated world.

We pray for children
    who bring us sticky kisses and fistfuls of dandelions,
    who hug us in a hurry and forget their lunch money.

And we pray for those
    who never get dessert,
    who have no safe blanket to drag behind them,
    who watch their parents watch them die,
    who can’t find any bread to steal,
    who don’t have any rooms to clean up,
    whose pictures aren’t on anybody’s dresser,
    whose monsters are real.

We pray for children
    who spend all their allowance before Tuesday,
    who throw tantrums in the grocery store and pick at their food,
    who like ghost stories,
    who shove dirty clothes under the bed,
    and never rinse out the tub,
    who get visits from the tooth fairy,
    who don’t like to be kissed in front of the carpool,
    who squirm in church or temple and scream in the phone,
    whose tears we sometimes laugh at
    and whose smiles can make us cry.

And we pray for those
    whose nightmares come in the daytime,
    who will eat anything,
    who have never seen a dentist,
    who aren’t spoiled by anybody,
    who go to bed hungry and cry themselves to sleep,
    who live and move, but have no being.

We pray for children
    who want to be carried and for those who must,
    for those we never give up on
    and for those who don’t get a second chance.
    for those we smother . . .
    and for those who will grab the hand of anybody
    kind enough to offer it.

Scents and Memories

2010-12-02T15:55:00.003-05:00

By Kim Rooks

Kim and Taylor after one of Taylor's
open-heart surgeries.

I think it’s interesting how a scent can take you back to the very day when you first smelled it, and how you can remember exactly what you were doing that day.

I washed my hands at the Shands cardiology clinic the other day and the soap is the same as one I used almost nine years ago, when I had to wash my hands before I could go see my baby girl for the first time in the Shands Level III Neonatal Intensive Care Unit. Taylor was 6 pounds, 9 ounces, with a heart rate of 60.

Who knew the road we have traveled would bring fear, sadness, frustration, confusion and happiness. But most of all, it has brought family and friends closer, and introduced me to people I would never have met if we didn’t travel this road.

Taylor with her pediatric cardiologist, F. Jay Fricker.

Recently, our pediatric cardiologist, Dr. Jay Fricker, said something I thought I would never hear.

In the past, he has said he doesn’t know what Taylor’s future holds. But that day, he said he thinks Taylor will be fine, and the only issue we will have to deal with is with her pacemakers.

I'm so happy for our baby steps of miracles that she has had in her life. God makes things happen for a reason and we will never know why.

Kim Rooks is the mother of Taylor, who is now 9 years old. Kim is co-founder and co-executive director of Broken Hearts of the Big Bend. By day, she works with the Greater Southeast Affiliate of the American Heart Association. By evening, she is an independent consultant for several product lines. Taylor was born with congenitally corrected transposition of the greater arteries (meaning not only were her greater arteries reversed, but her ventricles were, too), a large ventricular septal defect and complete heart block. By the time she was 5 months old, she’d had a double-arterial switch, her VSD closed, and a pacemaker implanted. In all, Taylor has had more than 10 heart surgeries in her life, including two open-heart procedures. Today, she is thriving.

Our Trip Back to the PICU

2010-11-17T16:12:00.000-05:00

By Grace Guadagnoli

A few weeks ago, we took our Anthony back to the pediatric intensive care unit at Shands Children’s Hospital in Gainesville to visit the nurses he had when he had open-heart surgery to repair his congenital heart defect. When we arrived, we saw Beverly and she was very happy to see him.

As my husband and I walked through the doors and down the halls, I had an overwhelming feeling: I was happy we were able to experience going back to the PICU, not as a patient, but to visit, a happy visit.

But as I walked down those halls, I could not help but feel happy and sad at the same time, knowing there are precious children and families there who have the fight of their lives. As I walked through the PICU, I said a prayer for each and every family in every room.

We are so blessed to have had the Shands’ PICU nurses take care of our little Anthony. We will forever be grateful for all they have done for us.

Grace and her family live near Lake City, Florida. Anthony, or "AJ," as he's also known, was born in September 2009 with tetralogy of Fallot.

A Baby. Really? But I’m Almost 43!

2010-11-08T18:30:00.020-05:00

By Penny Putman

Penny with her youngest son, Wyatt.

Only God knew the amazing journey He had planned for us when we found out we were going to have a baby in the fall of 2008. I was almost 43; we just knew I was entering menopause. But God had a much better and bigger plan than we could have imagined. Our lives were about to change forever.

At the time, we had Ethan, 16, and Forrest, 8, and life was pretty easy. A baby. Really? What was God thinking? After adjusting to the shock of the pregnancy, we knew our risks for having a baby with Down syndrome were higher because of my age. We chose to not have prenatal testing because we knew it did not matter if our baby had Down syndrome; he was God’s plan from the start, and we knew God was in complete control.

After a very quick delivery, Wyatt Christian Zane Putman was born July 6, 2009. He was a beautiful, healthy baby! We were told a few days after he was born that he has Down syndrome. We were devastated. I will never forget the pain of those first few days.

And there was more to come. At his first check up when he was 5 days old, the doctor detected a heart murmur. We were told of the high percentage of babies with Down syndrome who are born with congenital heart defects. “Wasn’t the Down syndrome enough?,” I wondered, “Does he (we) have to have more to deal with?”

At 10 days old, Wyatt had an echocardiogram, performed locally by a pediatrician who had cardiac training. Wyatt was diagnosed with a small ventricular septal defect, a small hole between the ventricles, and a small atrial septal defect, a hole between the atria. We were told they likely would close on their own without needing surgery.

As we looked for support locally concerning Wyatt’s Down syndrome, we were told over and again the local doctor often missed important diagnoses, and that it was imperative we seek the opinion of a pediatric cardiologist.

Wyatt, shortly after surgery.

We traveled to Pensacola for an appointment with Dr. Joseph Davenport at the Nemours Children’s Clinic. We knew we were at the right place. His awesome staff, thorough examination and diagnostic testing, confirmed the original diagnosis of ASD and VSD, but with the decision to closely monitor the holes to be sure they closed. We had appointments every couple of months until January 2010, when Dr. Davenport decided it was time to send Wyatt’s records to Children’s Healthcare of Atlanta at Eggleston for surgeons to evaluate. Within a couple of weeks, we heard back from Eggleston – they believed it was necessary to operate. We were devastated and scared. And I asked, again, couldn’t his Down syndrome be enough for us to deal with?

A happy Wyatt healing after surgery.

As much as everyone reassured us he would be fine, it wasn’t their child having his chest opened up for surgery. Praise God, Wyatt’s surgery went smoothly, taking less than two hours. We were quickly able to see him in recovery. He actually looked much better than I had prepared myself for. Wyatt spent about 48 hours in the CICU before being transferred to the step-down unit where we spent another 48 hours before being sent home. WOW! That was scary, leaving Atlanta to head home to Panama City with our baby boy who had just had open heart surgery!

Within just a few days, he was back to his happy self. Wyatt never indicated he was in any pain, and he healed quickly. By four weeks post-op, he was allowed to resume his physical therapy. His prognosis is good, and his cardiologist visits are farther and farther apart. He is now a 16-month-old, busy, little boy!

We were amazed at how quickly God healed our baby! Throughout his surgery and recovery, Wyatt was bathed in prayer by hundreds of people around the world, and we are so thankful for the answered prayers.

We know that God has great plans for Wyatt: “ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future.’” (Jeremiah 29:11 NIV) We give God all the glory for Wyatt’s fixed heart!

Penny Putman is wife to Tim and stay-at -home mom to three awesome sons; a terrific teen, Ethan, a cool kid, Forrest and an adorable baby, Wyatt, who just happens to have a little something extra, Down syndrome. Wyatt’s birth 15 months ago dramatically changed the Putmans’ lives. Penny’s life now revolves around therapies, doctors’ appointments and online research about Down syndrome, in addition to everyday household stuff and her responsibilities as women’s ministry team leader for her church. Wyatt has physical, occupational, speech and developmental therapies every week. Fortunately, they come to the Putmans. In addition to Wyatt’s heart issues, Penny also is currently working on hearing and thyroid questions. It’s a busy life, Penny says, one she could never handle except by God’s grace, and her relationship with Jesus as her personal Savior! Follow the Putmans' life at www.pennyspeeps.blogspot.com.

Celebrating McKenzie

2010-11-01T13:39:00.037-04:00

McKenzie Bailey was born Feb. 25, 2008. She was born with neonatal Marfan syndrome, a genetic, connective-tissue disorder affecting the heart and lungs. Neonatal is the most severe form of Marfan syndrome and is considered terminal. Some of McKenzie’s doctors did not think she would make it to her first birthday let alone her second, but she did. She fought hard, always smiled and loved to play with her toys.

She died March 24, 2010, just one day shy of turning 25 months old. Through her parents, Jennifer and Ashley Bailey, McKenzie touched many people’s lives and taught us many lessons about life, with one of the most important one being to make the very most of every moment. Jennifer and Ashley knew their time with McKenzie would be short, so instead of having annual birthday parties, they held parties on the 25th of every month, no matter where they were.

Here, McKenzie’s mom, Jennifer Bailey, tells about her daughter’s earliest months…

Happy Birthday, McKenzie
After a three-day (yes, three!) induction, McKenzie arrived on Feb. 25, 2008. After we settled in our room in the mother/baby unit, one doctor commented about McKenzie’s fingers — they were very long and skinny, almost spider-like.

The doctor said this could be a sign that McKenzie has a genetic disorder and we may want to look into having genetic testing completed. Marfan syndrome and other connective-tissue disorders were mentioned, but nothing concrete. And, of course, that’s not the first thing you want to hear just a day after having your precious baby.

The Long Road to Diagnosis
About 2 months after her birth, McKenzie was seen at Shands pediatric genetics clinic. The genetics doctors and staff looked her over, noting everything from head to toe. They did a skeletal survey — full head-to-toe X-ray — along with lab work to test for genetic disorders. At that point, the geneticist did not think McKenzie had Marfan syndrome. The only true identifier she had were the long skinny fingers. And so, the Marfan lab test was not ordered. Disorders that are caused by a deleted or additional gene were the disorders they tested for, because these do not have to have a specific gene identified.

McKenzie’s skeletal survey showed she had hip dysplasia, which is common among infants, so there was still nothing concrete pointing to Marfan.

In the meantime, we noticed McKenzie’s eyes were a little different. Her pupils seemed to bounce around when she looked at things and blinked. So, our next stop was the eye doctor. We saw a specialty eye doctor at Tallahassee Memorial Hospital. He did not know what to think about her eyes. All he knew is that she did not have nystagmus – a condition that causes the pupils to move involuntarily, usually horizontally, but sometimes they are vertical and/or rotary. McKenzie’s pupils would bounce when she moved her eyes, but then it stopped.

We were referred to a pediatric eye specialist at Emory in Atlanta. When he saw McKenzie, he said would almost bet money that she had Marfan because the lens in her eyes appeared to be dislocated, a Marfan’s trait. He also noted that she was nearsighted and suggested contacts because it was so severe and the degree of nearsightedness was very different in each eye.

Contacts for a 4-month-old?! WHAT?! But we did it. We learned a unique way to place contacts in an infant. So, every morning and every night, McKenzie’s contacts went in and came out.

While we were at Emory, we saw a pediatric orthopedist for McKenzie’s hip. He suggested a hip brace that would push her hip deeper into the socket. He did not think our daughter had Marfan, and he said if he were wrong, he would eat his words. Boy, was he wrong.

So many doctors, and McKenzie was only 4 months old. At this point, we also noticed that her head was flattening on one side and it was not reshaping itself. Add a neurosurgery consultation and a CT scan. Neurology discovered she had mild plagiocephaly (flattening of the skull) and slight craniosynostosis (a condition in which the sutures close too early, causing problems with normal brain and skull growth). We were set to try using a special helmet to try to reshape her skull.

It was also at this appointment that someone mentioned hearing a heart murmur. Of course, we all thought, how could we have been to all these other specialists and appointments and no one heard a murmur until now.

When McKenzie was 6 months old, we were sent to Tallahassee Memorial Hospital for an echocardiogram (an ultrasound of her heart), and then we followed up with a pediatric cardiologist in Tallahassee. The echo report said it was incomplete because the patient was “uncooperative.” How cooperative can a 6-month-old be?! Especially one who was just laying there playing.

The echo was not complete, but it did not appear to show anything; it was assumed that McKenzie must have an atrial septal defect (a hole between the atria) or a ventricular septal defect (a hole between the ventricles). It was also assumed that the whole must be closing and getting smaller, causing the murmur to be present – the smaller the hole, the louder the murmur. We were scheduled for follow-up when McKenzie was a year old – six more months.

But McKenzie never made it to that appointment. In October 2008, when McKenzie was 8 months old, she was being admitted to Shands Children’s Hospital.

Closing in on Answers
We didn’t know Oct. 15, 2008, was the beginning; we simply thought McKenzie was sick, she would get well and we would be home soon. She had been sick the previous few days, running a fever, coughing, throwing up. She lost her appetite, which, for her, wasn’t that unusual. But not eating much turned into not eating anything at all for more than 15 hours. She’d always been a little underweight, so not eating for half-a-day was a BIG deal.

We were admitted to the TMH pediatric unit, where they discovered she had pneumonia. The next day, her breathing had become so labored, we moved to the hospital’s pediatric intensive care unit. The doctors said if her breathing did not improve quickly, they would intubate her. Soon after, she was intubated. Everything was so new to us. We were very, very scared.

Once she was intubated, the doctors decided to do another echocardiogram because of the heart murmur and the suspicion of Marfan. She was sedated during this echo so that they could complete the exam. It showed that her aortic root was enlarged, she had mitral valve prolapse and mitral valve regurgitation – all classic cardiac signs of Marfan syndrome. This was the first diagnosis, but genetic testing would be the only way to identify it for sure.

Getting the Best Care

In those nine days at TMH, my husband Ashley and I had already learned so much. We knew what the ventilator setting were and what some of them meant. We knew when they changed a setting whether it was a good sign or a bad sign.

After a few days at TMH, McKenzie was not improving. Were the doctors at TMH out of ideas or options? We started asking if we should be transferred to another hospital. We knew when we needed to ask to move on.

By Friday, Oct. 24, we were transferred to Shands Children’s Hospital’s pediatric intensive care unit. McKenzie went by the Life Flight ground crew because the rain that night made it to dangerous to fly.

If you are concerned about your child’s care, or you believe your child would be better served somewhere else or by someone else, do not be afraid to ask for another opinion or to be transferred. If we offended someone, sorry, but when we were talking about our McKenzie, we didn’t care who we offended. We wanted the best care possible for her.

That’s a lesson we all learned: Do not be afraid to ask, ask and ask again. Whether it’s your child, another family member, or yourself, you have a right to know and to understand what is going on, and to insist doing what’s best for your loved one.

After many months in the hospital, McKenzie was able to come home with around-the-clock care from her parents, who had learned to do everything they needed to do, and from a home-health nurse. Jennifer plans to write more about McKenzie’s journey, so be sure to check in again.

Surviving a Congenital Heart Defect

2010-08-09T22:45:00.016-04:00

We are thrilled and honored to feature a guest blog by Steve Catoe, author of Adventures of a Funky Heart, one of the most informative and enlightening blogs out there, highlighting congenital heart disease. Thank you so much, Steve, not only for a great post, but for all that you do for the congenital heart community.

My name is Steve Catoe. I am hopeful that some of you remember me; last February I spoke at the Broken Hearts of the Big Bend Regional Forum on Congenital Heart Disease.

I am 43 years old and I have a congenital heart defect -- tricuspid atresia, to be specific. In tricuspid atresia, the tricuspid valve inside of the heart never formed. There is a wall in the spot it is supposed to occupy, and because of that my right ventricle is very small and practically useless. A heart defect strikes 1 in every 125 live births, but tricuspid atresia is one of the rarer defects. Experts say that 1 person out of every 10,000 people have what I have.

A few years ago my cardiologist told me that as far as he knew, I was the oldest living tricuspid atresia patient living. A few weeks later I met a fellow tricuspid, a woman who is a couple of years older than I am. Personally, I’d rather be No. 2; people expect the leader to dress nice, act dignified, and be the spokesman for the entire group. I’m just a simple country boy, and I don’t do any of that very well!

My “secret” to living so long with a congenital heart defect could very well surprise you. To live with a heart defect, you have to first make peace with the fact that your defective heart will one day give out.

That may seem like a harsh statement, especially to a young CHDer or a heart parent. But odds are, that is what will happen. Accidents do occur, but most people succumb to natural causes. We will, too -- but our weak hearts usually mean that we are granted fewer days.

And once you understand and can live with that fact, then you can ask the real question: What can I do to push that Final Day further into the future?

The short answer is “Take care of yourself!” Taking care of yourself encompasses everything from watching your diet, starting an exercise program, and even includes simple things like fastening your seat belt.

A proper exercise program can strengthen your heart and give it the energy it needs to fight off infection and illness. The stronger you can make your heart, the better - especially if you are starting with a weak heart. Be sure to ask your doctor what exercises work best for you, but for me, the answer is walking. With a walking program, you can move at your best pace and go as far as you are able -- and the next day, attempt to go just a little further! As you pick up the pace, your heart rate goes up and you really start to exercise your lungs. Over time, what began as a gentle stroll can turn into an intense exercise routine. And all you need is a good pair of shoes.

Watch your diet, especially if your doctor has given you a diet to follow. Try to reduce the amount of salt you consume. Your heart has to pump blood to all parts of your body, and the more you weigh, the harder it has to work. Losing as few as 5 pounds helps, but if you could lose more, it is usually a good idea. A heart that is used to pushing blood through a 175-pound body will have an easier job if you could lose 10 pounds!

Don’t let dumb luck ruin your life. Fasten that seat belt and don’t drive like a maniac. Don’t smoke, don’t drink to excess, and don’t do illegal drugs. Too many people fought to keep you alive and you have survived too much. Don’t waste your life by giving it away.

Something else you can do -- and it would be a major factor in surviving a heart defect -- is that even though you understand that your heart will eventually let you down, don’t run and hide. Don’t be scared, and never say “I can’t do that, I have a bad heart.”

There is more than one way to skin a cat, and probably more than one way to accomplish any task you face. Don’t just live your life...embrace it, enjoy it, and make the most of it. Inspire others.

And remember that every heart -- especially yours -- deserves to live a lifetime!

Where Have the Patient Interview and Physical Exam Gone?

2010-07-28T11:14:00.011-04:00

“No one cares what you find on physical exam; it’s what the tests show,” Dr. Lisa Sanders said. “And yet it’s clear the physical exam has important things to tell us. It can direct where we look. It can tell us – show us in a very real way – what’s going on.”

By Karen Thurston Chavez

My son’s last EKG scared me witless. It spit out its graph paper with its squiggly red lines, and along the diagnoses listed across the top: “possible Long QT syndrome.” (Long QT syndrome is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats.)

I knew enough about Long QT to know it’s a serious and potentially fatal. I know my son, William, has scimitar syndrome/partial anomalous pulmonary venous return, along with mild right ventricular hypertrophy and a mild narrowing of his right pulmonary artery, but Long QT syndrome?

I waited anxiously for our pediatric cardiologist Dr. Jay Fricker to arrive in the exam room and halt my increasing panic. And he did – in his thoughtful and methodical way in his calm and soothing voice.

That cardiology checkup changed the way I think about my family’s physicians – all of them: our pediatric cardiologist, heart surgeon, pulmonologist, pediatrician, family internist, urgent care physicians, psychiatrist, general surgeon, radiologist and all of our nurses.

I pay far more attention to how much time a doctor spends interviewing and examining me or my children than I do on what kind of diagnostic test he or she might suggest or order.

Thank you, Dr. Fricker. Our pediatric cardiology appointment went a little like this:

“Dr. Fricker, I looked at William’s EKG report. What does that mean? It says Long QT syndrome. I know what it is, but why does it say it’s a possible diagnosis?

Dr. Fricker gave me his calm, reassuring smile. “Ah. Diagnostic tests. Do you ever listen to NPR?”

“Yes,” I answered, wondering what in the world this had to do with the EKG report.

“Did you hear the interview with Dr. Lisa Sanders?” he asked.

“No,” I confessed, wishing he’d get to his point!

Dr. Fricker explained: “She’s the real doctor behind the TV show 'House.' She talked a lot about how we, doctors, don’t spend enough time talking and listening to our patients and spend too much running diagnostics. We’ve come to rely too much on tests – blood tests, X-rays, EKGs, echos.

“You’re an established patient now,” Dr. Fricker continued, “but technically, I should have come in here and talked to you first, asked how William’s doing, how his activity levels are, appetite, how you feel he’s doing. Instead, we did an ultrasound and an EKG first – an EKG that has shown you a report that lists a potentially serious problem.”

“So why would it say William could have Long QT?” I asked him.

He didn’t use these exact words, but Dr. Fricker’s explanation boiled down to this: Some EKG machines don’t provide possible diagnoses; some machines do. And with the machines that do, the possibilities may or may not be correct because it’s just a machine using some sort of a generic formula to determine various possible diagnoses.

William’s EKGs have never been normal. Even after corrective congenital heart surgery, he still has abnormal EKGs. The day of his cardiology checkup, the EKG machine read William’s quirky heartbeat and decided he might have Long QT syndrome.

Dr. Fricker read the other possible diagnosis on the EKG strip: right ventricular hypertrophy. That, he said, was probably correct. The right side of William’s heart worked hard those first 27 months of his life, and it still hasn’t returned, and may never return, to a normal size. Perhaps William’s right ventricle has been thicker than normal since he was born.

Dr. Fricker spent a lot of time with us, asking about William’s appetite, any unusual situations, fatigue, changes in activity levels. How did I feel William was doing? Dr. Fricker did his own physical exam. He talked to William, and asked him how he was feeling, whether he played any sports, what he eats.

“William, do you like pizza?” Dr. Fricker asked.

“Yes,” William answered.

“Well. Eat more of it. Let’s see if we can put some weight on you,” Dr. Fricker said, and smiled. “What about ice cream. Do you like ice cream?”

“I love ice cream!” William replied.

“Eat more of that, too!” Dr. Fricker said. “Do you hear that Mom? William should eat a lot more pizza and ice cream.” We all laughed.

Dr. Fricker told us more about the interview he’d recently heard on NPR with Dr. Lisa Sanders. In that interview, show host Dave Davies talked to Dr. Sanders about the lost art of the patient interview, and the lost science of the physical exam.

Dr. Sanders said she believes the physical exam is dead.

“We’re taught the physical exam in medical school, but it doesn’t take long for you to realize … no one cares what you find on physical exam; it’s what the tests show. And yet it’s clear, the physical exam has important things to tell us. It can direct where we look. It can tell us – show us in a very real way – what’s going on.”

Doctors don’t listen as well as they should, Dr. Sanders said. “…Shame on us. Because it’s been known that the patient is the source of the information that … up to 90 percent of the time, will give us the answer to the questions: What’s going on? What does this patient have?

“But we don’t listen to patients,” she said.

Amen, Dr. Sanders. I can attest to that. William’s first pediatrician was a terrible listener. No matter what ailment William may have had, that pediatrician always traced it back to germs at daycare. Apparently, there was no other reasonable explanation for William’s often-serious illnesses.

Ever since that cardiology visit with Dr. Fricker, I have paid closer and closer attention to how health-care professionals approach us during our appointments.

At Shands Children’s Medical Plaza in Gainesville, where we go for our heart and lung checkups, 97 percent of the time, we are thoroughly interviewed, nurses and doctors perform complete and necessary diagnostic screenings (height, weight, pulse oximetry, blood pressure, etc.), and we have echocardiograms, EKGs, pulmonary function tests and, sometimes, X-rays.

Doctors listen to William’s heart and lungs, while he sits and lays in various positions. They look in his ears, nose, mouth, eyes. Squeeze his hands, feet, fingers, toes. Mash on his belly, check his throat and neck. In the pulmonary clinic, they quiz him about his asthma medications – what he takes, how he takes it, and if he thinks it makes him breathe better.

At home in Tallahassee, our physicians are employed by Capital Health Plan and they run their practices similarly to the way Shands does. Thoroughly – with patient/parent interviews and physical exams first, with diagnostic tests (if necessary) next on the list.

It was this thoroughness through Capital Health Plan that finally led to William’s accurate diagnosis, after other physicians failed to listen or thoroughly examine our son.

Dr. Lisa Sanders’ NPR interview should be required listening for anyone who sees a medical professional, and everyone who is or wants to be a medical professional.

That cardiology appointment and listening to Sanders' interview has changed the way I approach our doctors’ visits.

If you are my doctor or my sons’ doctor, and you don’t talk to us and examine us and get a thorough patient history, then you better pull up a stool, grab your pen and paper and get comfortable. Because I’m going to give it to you anyway. We deserve nothing less.

Karen Thurston Chavez is founder and co-executive director of Broken Hearts of the Big Bend. Since her son’s initial two misdiagnoses and eventual correct diagnosis, Karen tries to stress to all parents the importance of advocating for your child’s health and your right to quality medical care by board-certified health-care professionals.

What I Know for Sure

2010-06-14T15:51:00.143-04:00

Alyssa and I have known each other since 2002, long before we had our second babies -- our heart babies. In June 2006, when my son had open-heart surgery, Alyssa organized meals, collected baskets of goodies, and took care of our house and critters while we were gone. Her support, as well as support she rallied from others, got us through. She did it for no other reason than she cared. She had no way of knowing that 2-1/2 years later, she would face a similar crisis. When Alyssa learned her unborn daughter had complex CHD, Broken Hearts of the Big Bend rallied for her. For no other reasons than because we cared and we understood.

What I Know for Sure

By Alyssa Brown

On Aug. 21, 2008, when I was five months pregnant, during what we believed to be a simple follow-up ultrasound, my husband Shevie and I learned that our unborn daughter had multiple complex congenital heart defects (CHD). Devastated does not begin to describe how we felt.

When you learn something is wrong with your unborn baby’s heart – her heart – it is hard not to think the worst. It’s even harder to imagine you somehow will emerge from the harrowing experience you now know is ahead of you better than you were when you entered it. When you don’t know the direction of the tunnel you are in, or where its end is, is it really possible to see the light?

For me, it was impossible to see the light during that critical time, but it was impossible for me not to believe in it. After all, since 2006, I had been a volunteer with Broken Hearts of the Big Bend. I worked with Karen Thurston Chavez when she started the group in June 2006, the same month her son, William, had open-heart surgery at Shands Children’s Hospital.

I had no idea at that time the work Karen was doing to educate and unite families in the Big Bend area who were faced with CHD would be so relevant to me. I had no idea when I was volunteering, I was helping to make a better life for a baby I then had no idea I was going to have.

What I do remember is wondering how the parents in the group managed to be so brave. I remember looking at the kids and thinking many of them looked so healthy that if I didn’t know they had heart defects, I wouldn’t have suspected it at all.

What I learned from Karen and others in the group through volunteering and just talking to them prevented Shevie and me from having to blindly navigate our way through Tallahassee’s medical community, which, for the record, does not include a board-certified pediatric cardiologist. We knew that to give McKenna the best chance at not only a good outcome but mere survival, she needed to be born at Shands at the University of Florida under the care of its Congenital Heart Center’s pediatric cardiologists.

To make this happen, Shevie and I traveled back and forth to Gainesville multiple times after the fateful ultrasound. Two weeks before my due date, we left home and checked into a hotel in Gainesville. Leaving Victoria in Tallahassee with her father (my ex-husband), and his family was hard because I did not know when I would be able to come home to her. I was thankful, though, that she got to stay with family and I wondered what other families, who didn’t have anywhere to leave their other children, did in such circumstances.

While in Gainesville, we spent 15 days walking the mall and other places trying to get my labor going, but were unsuccessful. On Nov. 25, we went in for an induction. McKenna was born the next morning at a healthy 7 lbs. 1 oz. After her birth, doctors confirmed she had double-outlet right ventricle, hypoplastic left ventricle (not full-blown hypoplastic left heart syndrome) and atrial and ventricular septal defects. We were so relieved because that was so much better than her original diagnoses of hypoplastic left heart syndrome, double-outlet right ventricle, transposition of the great arteries and atrial and ventricular septal defects. The plan for McKenna’s CHDs included the three-stage repair – the Blalock-Taussig Shunt, the bi-directional Glenn and the Fontan. She did so well after birth, she did not need the BT shunt, but did require a heart catheterization to widen her ASD to help her heart work more efficiently. She had her Glenn done in March 2009 and will have her Fontan in the next year or two.

The next five months were simultaneously sweet and filled with anxiety. In addition to the typical trials of having a new baby – sleep deprivation being the hardest to tolerate – we had numerous, constant doctors’ visits and an emergency hospital stay. When we were lucky enough to be at home, I feared that anything – too much crying or excitement – could be harmful to McKenna.

I wish I could say I endured these struggles with grace. Truth is, I spent so much time and energy trying to do everything I could to keep McKenna well and to not neglect Victoria in all the chaos, I spent what little time I had remaining praying, crying or cursing, depending on the circumstances.

I’ve had some pretty dark times in my life, but none as dark and complex as this. On one hand, I had a beautiful, new baby girl and relished watching her thrive. Yet on the other, I spent every moment in conflict, afraid I would lose her and unsure how I would go on if I did.

Those who know me well, know that above all things, I treasure feeling secure. In retrospect, I realize the intense conflict and despair I felt during those dark times were the beginnings of my coming full circle and learning to accept what felt like a hard, bitter truth: anything can happen to any one of us at any time. We really only imagine we have any security at all. Though accepting this truth blows a hole in the adage, “ignorance is bliss,” it truly gives new meaning to understanding the light at the end of the tunnel, and making a conscious choice every day to live in it.

And so now, just after the 18-month-mark, as I find myself sitting here, writing about it all, I know for sure I am a changed woman. In some ways, I’ve changed for the better: I usually take pleasure in activities that used to feel like drudgery: driving home, tackling tough homework assignments with Victoria, cooking. I know my worst day at work is better than the best day when my baby was in the hospital.

In others, I’ve changed for the worse: My temper is horrible. It has been all along, but I’ve lost the ability to control it when I most need to. I also probably border on obsessive-compulsive disorder when it comes to worrying about germs. I think about having enough Lysol® wipes and hand sanitizer in the house more than I think about having enough food. Sad, but true.

McKenna is thriving. She loves to eat and weighs a healthy 22 lbs. She takes medicine three times a day and we go to Shands for check-ups once every few months. Victoria is an awesome big sister. We know McKenna needs one more surgery, the Fontan, but we’ve had a lot longer to prepare for it than we did the first one and we are not doing so under duress. Shevie and I have both been fortunate enough to keep our jobs and have excellent insurance. I think very often about parents we met at Shands who were losing their jobs or being evicted from their homes while they sat by their child’s bedside. When I think of them, I know our trials are hardly the worst or most heartbreaking.

My mind often wanders back to the days, the years, before McKenna was conceived or even thought of. The days when I was just a volunteer, asking myself how the parents in Broken Hearts of the Big Bend managed to be so brave when their children’s hearts weren’t anatomically perfect. Now that I’m one of them, I can answer the question.

My answer is…I don’t know. In the thick of it, it didn’t feel like bravery, it only felt like doing what I had to do to save my daughter’s life. If it happened to you, you also would have done the only things you could: prayed to God, trusted your doctors and loved your baby.

Here’s what I know: In the end, it all has been worth it, and my new normal is pretty sweet. McKenna is beginning to use words now and I’m sure, if she knew how, she’d tell you the same.

Child with Health Condition Changes Life's Perspective

2010-06-10T22:18:00.007-04:00

By Laura Pearson

During a routine ultrasound during my 25th week of pregnancy, my obstetrician was concerned when he was able to detect only my heartbeat. Another ultrasound showed my son’s heart was beating only 48 beats per minute. The average heart rate of an unborn baby is between 120 and 160 bpm. Immediately, I was sent to Shands Hospital at the University of Florida in Gainesville, Florida, where I saw an obstetrician who specializes in high-risk pregnancies.

Doctors determined I had Sjogren’s Syndrome, an autoimmune disease similar to lupus, and my unborn son, Cody, had complete heart block. After that, I received weekly shots of the steroid, betamethasone, to mature his lungs for an early delivery. Eight weeks before my due date, Cody developed congestive heart failure and I had an emergency Caesarean section at Shands.

Cody’s been a fighter from the start and only had to stay in the hospital for 16 days. We were sent home with instructions about how to watch for signs of congestive heart failure. That occurred within his first year and he had a pacemaker implanted when he was 10 months old. Cody is 15 now and has had four pacemakers. He is doing great. Now that he’s 15, he’s anxious to start driving. Although he’s not allowed to play major contact sports, he has played Little League baseball, soccer, and basketball. He loves video games and hanging out with friends.

In the beginning, I asked “why” almost every day. Eventually, I answered that question with “So I can help others so they don’t feel as alone as I have.” Guilt played a nasty trick on me that first year. After I kicked it to the curb, I set boundaries for both of us.

First, Cody would grow up believing he was no different from any other child. That may sound easy, but in reality, it’s extremely hard. They want you to feel sorry for them and it’s so easy to do so when you look at that angelic face and think how unfair life is.

So, to make it work, however, you have to resist the urge. Cuddle them for the regular scrapes, boo-boos and disappointments, but stiffen your spine when they put a hand over their heart and say things like, “My pacemaker hurts.”

No, don’t ignore your child when this happens (far from it). But instead of freaking out or melting into a pool of fear, respond to them the way “typical” moms do with children who complain about a stomach ache. After you’ve determined there’s no reason to call Lifeflight, then, if you feel like, you may go to your room and cry.

Having a child with a congenital heart condition has a way of changing your whole perspective on life. I wonder sometimes who I would be today if Cody had been born healthy. I’ll never know, but I do know that I’m a much stronger person of spirit, mind and body. It’s toughened me up, which is a good thing, and made me very aware of just how precious life is.