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Our son was born on 02/06/20 with hypoplastic left heart syndrome. He received his first
catheterization procedure immediately following his birth and we learned on February 7th , his
best chance at living would be to be placed on the pediatric heart transplant list to receive a
donor heart. Whew.
Years ago, my husband and I learned that the word Hope when translated in Greek means
in anticipation or in expectation of good. With this in mind, early during our stay, we decided to
circle a day on our calendar to await in anticipation to take our son home (Easter – 04/12/20).
Hope became our catalyst, our foundation, for the months that followed the birth of our son.
We experienced scary days, hard days, and days filled with uncertainty but we also experienced
joy in these days from the love and care we received.
Our countdown was dwindling down with only 12 days remaining and it seemed impossible, but
then our son received the greatest and most priceless gift on March 28 th. What seemed
impossible become possible!
And with our continued expectation of good, as a family of 3 with our two puppies waiting at
home, we took our son home before Easter (with 3 days to spare)! Townes also became the
first pediatric heart transplant patient to go home during the global pandemic from Monroe
Carrell Vanderbilt Children’s Hospital. We learned that Hope can be found even in the direst of
circumstances.
When our daughter was born in August of 2018, we had no idea she had a CHD. It wasn’t until she was referred to a GI specialist for poor weight gain when we discovered how sick our daughter really was. The GI doctor immediately referred us to a cardiologist, who then referred us to Egleston. There it was confirmed, our daughter had ALCAPA syndrome, a rare congenital heart defect. The left side of her heart was very enlarged, she had an enlarged liver, and most of her lab values were terrible. She had open-heart surgery a week later to try to correct the defect, but the damage was already done. We were told it was as if “a seven-month-old had a massive heart attack.” We only waited a few weeks before it was decided she would need additional support, and in April, she had another surgery to install a Berlin heart, to bridge her until she could get a new heart. We waited for a few months and finally got the call on July 27, 2019. We just celebrated her first heart anniversary and her 2nd birthday!!
Enduring hearts has helped us with the Road to Recovery Gas Card Program. For the first year, there were a LOT of trips to and from Atlanta for labs, follow up appointments, and other appointments. Living almost two hours away, one way, puts a lot of strain on finances. The Road to Recovery program helped us get to appointments!
One thing I would like to pass on to heart warrior parents is always have hope. During one of the darkest moments of my daughter’s in-patient stay, I had a doctor tell me, “it’s my job to prepare, it’s your job to HOPE.” From the moment we arrived, we tried to be hopeful every day we were there. There were days that it was hard to find, but even if it was in a single smile we got from our daughter, there was always something there we could use to build hope. Just because there’s a bleak beginning, doesn’t mean you can’t have a beautiful ending!
Tripp was diagnosed with Double Outlet Right Ventricle (DORV), pulmonary stenosis, and VSD at his anatomy scan at 20 weeks in utero. Later into the pregnancy, he went into heart failure and his family was told he would need a heart transplant at birth. One month after birth, Tripp had a ventricular assist device (VAD) placed, and his family could tell he wasn’t going to make it if we didn’t get a heart soon! Tripp only had his VAD 36 hours and they received THE call! It was a miracle! After the transplant, he had a hard road to recovery, four months of one step forward ten steps back. This fighter finally turned a corner and decided he was ready to come home. He is now a happy thriving seven-month-old. We thank God for our donor family every day!
When Ellen was 9 she was living her best summer! Irish dancing, paddling in the bay, her first overnight away camp with the Girl Scouts, and then suddenly she was sick. We thought she had a stomach bug and were shocked to learn she was in Severe Heart Failure with Severe Dilated Cardiomyopathy. We learned soon after admission that it was genetic. It was amazing her heart lasted as long as it did. Ellen was listed for a heart transplant and received the gift of life 20 days later. Ellen wouldn’t be with us without her donor and the dedicated cardiac and transplant team at A.I. DuPont Nemours Children’s Hospital. She kept up academically with her 4th-grade class virtually and participated in tons of activities that would support her mental and physical health. She participated in fundraising opportunities with her family to benefit other kids so that every kid can have a healthy heart! Ellen enjoys riding her bike, laughing with friends, singing, dancing, drawing, basketball, and camping with her family.
Ellen is the strongest 10-year old that her mom knows and can’t wait to get back to school and be with friends. Ellen celebrates her 1st anniversary this August 20, 2020! Enduring Hearts and the other heart warriors inspire us to be our best.
Daphne was born with HLHS in San Francisco. She was doing great for about a year post-Glenn surgery, when she mysteriously went into heart failure. After several weeks of recovery from cardiac arrest during a cath, she is now listed for a heart transplant. She has been waiting while inpatient for 3 months and counting. Because of COVID-19, the hospital has a 1 parent at bedside policy, so her parents have been commuting 1.5 hours every few days to trade-off being with her. These gas cards will definitely help. Thank you!
Graeson was born happy and healthy in 2010. He always had perfect yearly check-ups and was hardly ever sick. In October 2016, he came down with what the doctors continually told him was the stomach bug. For over a month, and four doctor facilities later, he was finally correctly diagnosed with dilated cardiomyopathy. Needless to say, this came as a complete shock to his family as he up until that moment had been perfectly healthy. On January 5th, 2017, he was blessed with the gift of a new heart and is once again a happy, healthy, and thriving almost 10-year-old boy who has his whole life ahead of him.
Thank you Enduring Hearts for your continued efforts in the advancement of early rejection detection!
George is 3.5 years old and just recently received his second heart transplant.
He received his first heart at 9 months of age, and unfortunately, a year and a half later he developed Antibody-Mediated Rejection and developed CAV (cardiac allograft vasculopathy).
CAV is one of the leading causes of failure in heart transplants and is not fully understood why it occurs.
This is why funding research to understand how to prevent CAV and make these organs last longer is imperative.
Brody was born healthy. At seven weeks old, he went into cardiac arrest. We found out he was in heart failure. Oral medication didn’t work. Iv medicine and ECMO was the only thing keeping him alive. He received his gift of life at four months old.
2017 Family Photos
Mason was diagnosed with hypoplastic left heart syndrome when his mom was 5 months pregnant. His first surgery was at 3 days old. He did ok until he had an infection that ate through his sternum. He had a brief cardiac arrest during this recovery. We eventually went home on an NG tube. At 6 months old, he had his second surgery. He had a bumpy recovery that was complicated by pulmonary hypertension, narcotic withdrawals, more clots, and hemiparesis of his diaphragm. After this, he came home with the feeding tube and home oxygen. They didn’t think that he would survive the next surgery, but they were also not sure if his lung pressures allowed a heart transplant.
We finally found out that he qualified for a heart. We were so relieved! We ended up waiting for 3 1/2 years though, as we had two calls that didn’t work out. The doctors started talking about trying a risky surgery for him, as we were starting to run out of time. I didn’t feel good about it but didn’t know what else to do. Mason was also starting to get impatient waiting for his special phone call. He was scared he was going to die. When we got it, Mason threw his oxygen to the ground and wanted to leave as soon as he could. It was a rough recovery, needing CPR again. But soon he stabilized and was doing great!
His big goal was to finally be able to run. He had been hooked up to oxygen and a feeding tube for 6 years and now he finally had freedom! He loves playing video games and Lego. He is so curious and tries to figure out how mechanical things work. He enjoys gymnastics, floor hockey and swimming. He loves daddy wrestles and mommy cuddles. His sister is his best friend (she earned his first smile after he woke up from transplant). We are so grateful for everyone who fought for him. His surgeon told us that he wouldn’t have survived the risky surgery – so that family signed those papers just in time. They saved our little boy. I am excited for the future of research that will help us look after this precious gift.
Mya was 15 months old, and on a family vacation to Disney World, when she went into heart failure. Up until then, she had been considered a ‘healthy’ child. Mya was admitted to a hospital in Orlando, Florida, where she was diagnosed with dilated cardiomyopathy. After a couple of weeks away from family, friends and her sister, Anya, Mya and her parents returned home to Marietta, Georgia, where she received follow-up care at Sibley Heart Center.
Mya did well on medication for almost two years, until the morning of her third birthday, when she began to exhibit signs of heart failure again. Her parents took her to the hospital, and later that day, on March 2, 2012, Mya was placed on the transplant list as status 1A (most urgent). Mya waited in the hospital for her new heart for six months! Her hospital room became her home, decorated by all of her artwork, and the artwork of her friends and cousins.
Mya’s Mommy, Daddy, Grammy, Mom Mom, Grandpap, Pop Pop, aunts, and uncles took turns staying with her, so she was never alone, and the nurses became part of her family, too. Thanks to all of this support, as well as her incredible strength and confident personality, Mya was the strongest, most adapted child. She thrived, and actually enjoyed her stay in the hospital! The only time Mya ever showed any signs of being ready to leave is when she said to her Mommy, “The mailman is taking a long time to bring my heart!” That’s how she understood the situation; her old heart was broken, and a new one was coming in the mail.
Finally, on September 2, 2012, Mya’s family got the call from the hospital about her new heart! Only five days after her transplant, Mya went home to be with her family again. Now, Mya is doing great and enjoys all the things that four-year-olds love, including swimming, gymnastics, her dogs and her family.
Grace was born on Easter Sunday in 2003 and was diagnosed with Dilated Cardiomyopathy, an enlarged heart, as an infant. She compensated well despite her very weak heart for the first several years of her life. In January of 2010, her symptoms worsened and she was no longer able to function with her weak heart. She was admitted into the hospital, was listed for a transplant 3 days later and within a week’s time was too sick to be able to eat on her own. She was fed intravenously and was on IV medications during her three month wait for a heart in the hospital. Thankfully she received her heart on Easter Sunday in 2010, ate the next day, walked two days later and came home only 6 days post transplant.
Grace is now in high school, is on the high school swim team and is in her church’s youth group. She plans to be a pediatric nurse and would like to work at Children’s Healthcare of Atlanta at Egleston which has become our home away from home at times. She is taking classes as part of the healthcare pathway in her high school to start her career preparation. We are hopeful for her future ahead and appreciate all of the work Enduring Hearts is doing to help her have a bright future ahead.
Riley was diagnosed with cardiomyopathy days after being born. She was immediately placed on the transplant list. After nine weeks of being hospitalized, Riley received the perfect heart for her. She is now 12 years old and doing wonderfully!!
Kaleb was born on June 9, 2015 perfectly healthy, we thought. Around 2 months old we started to notice he was grunting and coughing but the pediatrician said it was just a cold. That next weekend he was barely eating, fussy, sweating a lot, wanting to sleep more and still coughing. We took him to Children’s Healthcare of Atlanta’s urgent care just to see what was going on. After several tests, he was life-flighted to Egleston because his EKG was really abnormal. He was then admitted and diagnosed with dilated cardiomyopathy and left ventricular non compaction. After a couple days of not knowing, he was placed on the list to receive a new heart. On December 3, 2015, we waited 11 weeks and 2 days for that call that there has been a match for Kaleb. He was a couple days away from being 6 months old. 7 days after transplant we went home.
Today he is a thriving 3 year old all because a family made a selfless decision to donate during the hardest days of their lives.
Everett’s transplant journey started while he was in utero. As first-time parents, Kelley and Jeremy Gray were beyond excited when they learned the news of their pregnancy. However, at the 20-week prenatal anatomy scan, the baby was diagnosed with a severe congenital heart defect (CHD) known as Hypoplastic Left Heart Syndrome. This meant Everett would be born with a small, underdeveloped and nonfunctioning left ventricle and would not survive without surgery.
Jeremy and Kelley welcomed Everett to the world a little earlier than they expected when he arrived five weeks premature. He was transferred to Children’s Healthcare of Atlanta at Egleston the night he was born, and his first open heart surgery was performed when he was just two days old. The surgery was successful, but the recovery was long and difficult for the tiny infant. Everett’s second open heart surgery, the Glenn procedure, was performed when he was almost five months old. His cardiologist’s plan was for Everett to have a third open-heart surgery around age 4, and the family hoped for a time of more normalcy with their precious son until then, despite the frequent doctor appointments, daily medications, and developmental therapies that are part of life for a child with a severe CHD. The family understood that Everett would eventually need a heart transplant, but the hope was that the staged palliative surgeries would buy him more time until then because the need for healthy, matching organ donations outpaces the availability.
Then in the middle of the night on March 31, 2015, when Everett was 3 years old, he woke up struggling to breathe. They rushed to Egleston’s ER and after an emergency cardiac catheterization, learned the devastating news that Everett was, for the second time in his young life, in severe heart failure. It became clear to the doctors that Everett’s heart would not recover and his condition would continue to decline. On April 3rd, he was listed for a heart transplant at the highest priority status while admitted to the cardiac intensive care unit to wait for a matching heart.
At 4:00 a.m. on June 4th, after 65 days in the cardiac unit, the Grays received the good news that there was a heart for Everett, and the transplant surgery began later that night. On June 9th, Everett was discharged to home. After a few minutes home and soaking it all in, Everett quickly picked up playing trains right where he left back in March.
Everett’s heart transplant truly gave him a second chance at life and the Grays try to be very intentional about not taking for granted any of these bonus days with their precious, amazing boy. But Everett’s family understands all too well that a transplant is not yet a cure, that transplant rejection is a constant threat, and that frequent doctor visits, daily medications, complications from immunosuppression, regular blood work, annual heart cath and biopsy procedures, and the costs in terms of time, money, and worry of all this play a large part in their lives as well. Without incredible medical advances, Everett will eventually require another transplant, which is why the Grays eagerly support the work and mission of Enduring Hearts because they believe we can do better for Everett and kids like him. We are so grateful to Everett’s donor’s family for their strength to say yes to a life-saving gift for Everett and we will do all we can to protect that precious heart. We are so thankful to Everett’s incredible team of doctors and nurses who have kept him alive and still work to keep him healthy and strong. We are so thankful to Enduring Hearts and its financial donors, scientific advisory board, and parent support network for giving us hope in a better future for Everett. And we are so thankful to everyone following Everett’s journey for your incredible support and encouragement.
Everett’s name means “strong and brave, like a wild boar,” and to date, his parents report they have not met anyone of any age who is stronger or braver. Because of the gift of his heart transplant and the hope that medical research will provide longer and better outcomes for kids like Everett, this little boy is able to go to school, live to the fullest, and dream about his future.
Mallory was born on April 24, 2012, as a healthy baby. Ten days later she was rushed to the hospital due to trouble breathing. After hours in the emergency room, Mallory was diagnosed with Myocarditis – an unknown virus was attacking her heart. At that time, she was placed on ECMO which allowed her body to rest in the hopes that her heart would recover and at the same time she was listed for a heart transplant. 10 days later, she was taken off ECMO and her little body showed signed of slight improvement. At that time, Mallory was removed from the heart transplant list and spent the next few weeks in the Cardiac ICU at Children’s Healthcare of Atlanta. After a total hospital stay of 6 weeks, Mallory was able to return home, but the virus left a lasting impression on her heart. She was diagnosed with Dilated Cardiomyopathy.
With the help of multiple medications, for the next 2 years, Mallory continued to grow and thrive with a severely enlarged heart. In September of 2014, it became very apparent that Mallory’s heart was never going to recover. In fact, it was getting worse and at that time was the size of an average adult’s heart. Mallory was in severe heart failure – failing to thrive, she could no longer climb the stairs and needed the help of a feeding tube for nutrition. It was at this time that her doctors and parents knew that the best hope at a chance of life would be a heart transplant. On September 5, 2014, Mallory was listed as a status 1B for a heart transplant with the hope that she would remain at home until a donor’s heart was available.
Her health continued to worsen and on October 6, 2014, Mallory was admitted to the cardiac unit at Children’s Healthcare of Atlanta – Egleston to await her lifesaving gift. At that time, her status on the transplant list was increased to a 1A – most urgent. Mallory’s mom, dad, and grandparents took turns staying with her in the hospital while ensuring that her sister – Madison (5 years old at the time) – was also taken care of at home. Their community, family, and friends rallied around the Halls with support and prayer, but hospital life was hard. They did what they could to make her hospital room her home – decorated with pictures from her sister and cards from family and friends. Mallory even had a play area in her room with her own computer, play mat and so many toys!
Mallory waited patiently for her “brand new pink heart.” Two months later, at 22 AM on Sunday, December 7, 2014, Mallory’s family got the call from the doctor’s that they had been waiting for. A donor’s heart was available, and it was a perfect match for Mallory! Only 5 days later, Mallory went back home, and her family was whole again.
It has been almost 4 years since Mallory’s transplant and she is doing fantastic! She is 6 years old and in 1st grade at Coal Mountain Elementary School in Cumming, GA. She loves being a “normal” kid – cheerleading, singing/dancing, boating, swimming and playing with her friends. She is a fighter and has a love for life, her family and faith that is unlike most 6 -year olds. Mallory does not yet understand fully her road to a brand- new heart, but her family remembers it all too well. Her life and heart are a precious gift and they work hard to ensure that her donor and his/her family are honored every day.
But, they also know very well that transplant is not a cure. She takes anti-rejection medicines daily which have their own impacts on her body and her health. Research and medical advances are needed and without them, Mallory will need another transplant in the future. Both of Mallory’s parents are very involved in Enduring Hearts and ensuring that Mallory and other children like her are given the best chance possible.
Harrison (Harry Potter) is a 16-month-old, born with HRHS (PAIVS). Just 3 days after he was born his cardiologists discovered that he was completely missing his right coronary artery and was at high risk for SIDS. He was listed for transplant at 18 days old and we waited as an inpatient. When he was 7 weeks old he underwent life-saving heart transplant surgery. He went home for the first time at 2 months old, and has been a strong fighter through it all. None of the processes have phased him. He has hit all of his major milestones from crawling to walking to climbing, he loves to play patty-cakes and hear me sing him songs. He likes to help give himself medications and loves to visit his doctors.
