A Cure for Heart Defects

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 ...

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

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

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!

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

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

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?

“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

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

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.