Congenital Heart Disease

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

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.