Patient Stories

Nevaeh Hamilton

patient story 1
Where do I start, it took the lining of stars to form and having the ultimate dream come true. I re-committed to the one man, whom had my heart all this time, and he gave me “a piece of heaven", our baby girl: (the empress) Nevaeh. My pregnancy was joyous; she was born on November 12, 2009, on the initial date and was spontaneous. Everything was priceless; I had the little girl I always wanted. I had it all. At the tender age of 2 months and a week while preparing for her first sets of needles, I noticed mourns and was asking around. Everyone stated they thought it was her way of talking but that didn't settle with me; something was wrong. I took her to the clinic even, there it was the same thing, but being adamant in finding out more caused for the physician on call to request a chest x-ray and on that day of January 20, 2010, my life was flipped upside down.

The diagnosis was “dilated cardiomyopathy" (an enlarge heart mainly on the left side). It would be the beginning of how 'special' this bundle was; only a creation truly made from God can withstand what came after. Lots of tests, medicines, procedures, nurses, doctors, results theories, therapy sessions and so transpired.

For Christmas because of her reports and progress, our little one was taken off the list- temporarily; it was very exciting on our part, we thought we had it good. Unfortunately the tone changed and concerned doctors and specialists thought it was best to put her back on at the end of January; so it was up for serious discussions and then our baby was put back on the list on the 3rd or 4th of February 2011.On the late morning @ 12:10am of Feb 5th I received a call from her doctor stating she had a 90% match for my girl. (I always imagined what that day would of been like many times in my head but all I know is I was all alone and very shocked, worried, scared, unsure if I was supposed to say yes, what to do..) It fully didn't register what was about to take place and her dad was out of town supposed to come back the same night: would he make it?

They wheeled her in behind those doors passed 12 midnight on the February 5, 2011. I didn't see her again until 5:30am February 6, 2011. Her father's and I's life was about to change in ways we couldn't even imagine-God, & Sick kids gave our daughter a second chance at a brand new life. We can't be more grateful for all the help, support, and new friends now family we got from this hospital. Sick kids are like angels from the sky what they do on a daily basis is overwhelming and complicated for anyone to fathom or even understand but they are the greatest.

Nevaeh Hamilton is 2 years and 4 months old now and has went through a thorough beginning but just so the balance of her days become effortless. After coming through an open heart surgery at the beginning of 2011 in February; she than had a lapse with a virus still unknown to us a month after in March, a week before my birthday. It knocked her out with seizures for a full week( a full head to toe makeover). To be able to travel in July 2011 for our long awaited wedding in Jamaica. To than the unexpected loss of her father in December 2011; in closing off the year. In his eyes she was the ultimate gift; if you saw them together you knew his love for her was exceptional.

To the donor we stretch our hands to and can only imagine your ordeal that actually united us both, but from a mom of 4 now whom thought that I could and wouldn't have a girl to have one and partly because of you get to keep her; I am very humble and forever thanking you. You will always be a part of us. She is so alive, vibrant, loves to smile, very outgoing, has an attitude but it’s to die for. Loved by all that encounters her, she has changed many.

In her short time to date is "truly our piece of heaven"; Her purpose may not be known now ;BUT ALL WILL KNOW HER IN TIME!

Daniela Soto

Please click the link below for a wonderful video about a 3 month old who was kept alive by Berlin Heart.
http://www.nbcnews.com/video/nbc-news/46501967#46501967

Avery Toole

Please click the link below for a wonderful article in People Magazine about a heart transplant patient in Boston, MA.
http://www.people.com/people/archive/article/0,,20580712,00.html

Jeanne Anne Love

engage16
My heart story began many years ago. It was a spring day in 1984, seemed like any other, sun, flowers, fun ahead. It was, however, the day that changed my life forever. My mom noticed that I was intent on napping. I would take a nap only to go back to sleep for another nap. I was 18 months old so that didn't seem normal. Then she noticed my breathing seemed to be accelerated and my heart was racing. She immediately took me to see my pediatrician. He immediately put me in the hospital and started tests. The tests determined that I needed to see a pediatric cardiologist for further evaluation. After hospitalization at LeBonheur Children's Hospital and my first catherization (with many more to come) I was diagnosed with dilated cardiomyopathy. The plan was to treat me with medication, and monitor my progress, with a hopeful prognosis. The doctor hoped that I would outgrow the condition by age 7 or 8.

I grew and seemed perfectly healthy, and except for the bi-yearly visits to the doctor, I seemed like a normal little girl. However, at age 7, things began to change. The medication was working less effectively and symptoms were surfacing. My ejection fraction was dropping and my heart was enlarging. The next 4 years were a roller coaster ride. One check-up was good, the next was bad. I was very thin and not feeling well.

In August of 1994, I was 11 years old when the doctor looked at my parents and me and said, "It's time for a transplant". Something about the matter of factness of this statement caused my parents to question if we were in the right place. My Uncle, a physician in Memphis, TN, began researching and questioning his co-workers. "Where would you want your child if they were facing a heart transplant?" The answer was the same every time, UAB in Birmingham. In late August we headed down south to meet the doctors who would ultimately give my life back.

At that point the team of doctors I saw hoped that medication would control my symptoms, at least for awhile. My parents were amazed at the positive attitude of my new doctors. Although the diagnosis was the same, the attitude about the rest of my life was different - it was one of hope. It didn't take long for my condition to begin to worsen. I was coughing constantly, very thin, and I had no energy. In November I returned to UAB. They determined I was in heart failure, and they drew fluid off my lungs which made me feel much better, and the doctors decided we should go ahead and do an evaluation for a transplant and have that behind us. It was obvious that a transplant was in my near future. We went home a few days later, I had passed my evaluation with flying colors. The next 3 weeks were hard ones. It was Christmas time and my parents tried to make it as normal as possible. I was coughing and nauseous and stayed on the couch at home most of the time.

On December 29th my parents decided it was time to head back to UAB. I had lost weight and hardly had the energy to walk. It was time - we all knew it. Again, the attitude was so positive, Dr. Bourge looked at me and said, "Let’s get rid of that old heart and get one that works." At this point we met Dr. Kirklin for the first time. He told my parents that day that we needed a heart very quickly. On December 30th I was taken to have a central line put in to prepare for what was ahead. At about 8 p.m. Dr. Kirklin brought me back to my hospital room, and he said to my parents, "I've found something interesting." (My mom's exact memory of his words) She says she'll never forget the kindness and sincerity, when he said, "We have a heart." He told us the team was headed to South Carolina to get me a heart, and surgery would be around 6 a.m. the next morning, New Year's Eve. A new year, a new heart, a new life!!!

Around 6:30 a.m. I was taken to surgery, around noon on January 31st my parents waited anxiously and finally the call came. It was Dr. Kirklin, and again if my mom's memory serves her well, his exact words, "Mrs. Fowler, your daughter's new heart is working beautifully." Many hours later I woke up a new little girl. Dr. Kirklin would never be the same to me. God had allowed him to give me new life, and he literally had held my heart in his hands. He gave me a chance to live a normal life. The following year I was on the cheerleading squad at my middle school and went on to dance on the Dance Team during my high school years. I was able to go to college and after graduating college my heart brought me back to UAB. I am now working in Cardiothoracic Research. I just recently got married and couldn’t be happier! Heart transplantation gave me life. I am forever grateful to my donor family.

Gabrielle Bolden

gabby
A few months after Gabby was born in April 2008, she was diagnosed with pediatric myocarditis in August 2008. The disease was treated by medication until April 2015 when Gabby became ill with a respiratory virus. Gabby couldn’t seem to recover from the viral infection so doctors admitted her to the hospital. A catheterization revealed that the right side of her heart was severely damaged. All her major organs were enlarged. They moved her to the CVICU and that’s when we found out how sick she was.

After several months in the hospital, Gabby was placed on the heart transplant list. Even though she was on a continuous IV infusion of medication, she was able to start school in August 2015. Surprisingly, just a few days into the school year, we learned a new heart was available. As they rolled her into surgery, she asked the nurses if she could see the new heart she was about to receive. They told her they didn’t think that was possible and she replied, “That’s okay because now I get to go to Legoland.”

Surgery and recovery went smoothly and Gabby was home two weeks after the transplant. She was so excited to go back to school that she packed her lunch herself the day before.

Gabby has a lot of big plans. She is currently playing soccer and is interested in taking gymnastics and swimming lessons. And, of course, they are planning their trip to Legoland.