Thanks to Their Toddler’s Heart Transplant
February 1, 2019 -- February is the month to celebrate love and hearts. Since 1964, February has been known as American Heart Month throughout the United States. For the Protiva family of Omaha, Nebraska, February truly is a month to celebrate selfless gifts from the heart. Their son, Abel Falcon, is alive and able to celebrate Valentine’s Day this year because of the new heart he received nearly two years ago.
Abel Falcon Protiva was born in January 2017 with a rare congenital heart defect called Hyploplastic Left Heart Syndrome (HLHS) in which the left side of the heart is severely underdeveloped. Without life-prolonging interventions, HLHS is fatal. But with a series of operations or a heart transplant, a child may survive. When Abel was only six days old he underwent the first of three planned open heart surgeries to help correct his heart’s defects. Unfortunately things did not go as smoothly as the surgeons had hoped during his first open heart surgery. The surgeons had to redo a part of the procedure they were not pleased with, which resulted in two more hours of surgery and having to put the baby back on bypass. The tiny infant’s chest was open for a total of seven hours.
Wendy and Jason had prepared for the day of Abel’s birth by researching HLHS nonstop for 19 weeks; they thought they were ready for anything. Twelve hours after their baby was wheeled off to his first open heart surgery, Jason and Wendy finally got to see him again. Abel was grey and had tubes coming from everywhere. He remained intubated for several days while his lungs regained strength. During his recovery the doctors discovered a leaky valve in his heart. His medical team went back and forth about whether or not to do surgery again and eventually decided to open his chest and make the repair. The surgery went well. Abel spent a couple more weeks in the Pediatric Intensive Care Unit (PICU) before he was moved to the heart floor, which was one step closer to home. Just a few days shy of his one month birthday, Abel was discharged to home.
“Home. Children’s Hospital of Omaha had become our home. It was all we knew. It took quite a bit of adjusting once we got to our house but it was our new normal. Our daily routine consisted of six medications in the morning and six in the evening. We had to monitor and record our baby’s food, oxygen saturations, weight and heart rate every day. It became second nature and we were finally starting to enjoy being at home when we were thrown another curve ball. Exactly one month after we came home, we found ourselves checking back in to the hospital because Abel was diagnosed with heart failure at his routine, one-month checkup,” said Wendy.
A test done during that appointment showed that his previously repaired tricuspid valve was leaking at an alarming rate causing his heart to work overtime. Wendy and Jason were told that Abel's feedings and weight gain would determine the next move. If he was unable get through this set back on his own, a heart transplant would be his only chance of survival.
“As scary as that sounded, a heart transplant was in the back of our minds all along,” Wendy said. “Whether it be at two months, two or 22 years of age, HLHS kids will inevitably need a new heart. We never imagined it would be this soon, but if a transplant would save his life we were ready.”
Wendy and Jason met the transplant team, started a massive amount of paperwork and set up meetings with a variety of specialists who would play vital roles in their family’s eventual transplant journey. A transplant coordinator at Children’s Hospital of Omaha suggested Wendy and Jason consider fundraising for transplant-related expenses and introduced them to the Children’s Organ Transplant Association (COTA). Wendy did a significant amount of research and in early May called COTA’s 800 number to ask questions and learn more about how COTA might be able to help. There were many family members, friends, work colleagues and neighbors who were anxious to find something they could do to help the Protiva family, and it seemed to Wendy that COTA was the perfect way people could make a life-saving difference.
COTA is a 501(c)3 charity so all contributions to COTA in honor of Abel are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. COTA uniquely understands that parents who care for a child or young adult before, during and after a transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. A COTA fundraising specialist trained the family’s volunteers and walked them through the entire process. These committed friends and family members started working to raise funds for transplant-related expenses.
“COTA was, without question, the perfect option for us. Once we became a COTA family contributions and support started rolling in,” Wendy said. “It was unbelievable and the best kind of overwhelming.”
At this point in his transplant timeline, Abel was stable but very weak. Wendy and Jason started to get anxious as they waited for insurance approval of their baby’s heart transplant. They watched Abel struggle to eat and breathe. His blood pressure was inconsistent and his oxygen saturations were alarmingly low at times.
“Early one morning Abel's arm began twitching while I was holding him,” Wendy said. “It was only the slightest bit, but it was noticeable enough and very concerning to a mom of a heart hero. Abel was having seizures. Before I knew it there was a team of nurses and doctors at the bedside trying to maintain his oxygen levels and pushing medication to stop the seizures. Abel was rushed out of the room for an emergency MRI; we were told we would be heading back to intensive care. The scans clearly showed Abel had suffered a stroke.”
Fortunately, in babies, the brain can recover a lot more quickly from a stroke. That was true in Abel's case and he bounced back immediately. The doctors were amazed once again by Abel's resilience. In the midst of Abel’s stroke recovery, Wendy and Jason were told their insurance company had approved his heart transplant. But because of the complications from the stroke, Abel’s neurologist wanted to wait to add him to the heart transplant list. Abel’s family understood but found it hard to continue to be patient.
Once Abel was stable, he and his parents moved back to the heart floor and it was six days before ‘the roller coaster’ struck again. One night when Jason was at his bedside, Abel stopped breathing. The doctors and nurses immediately started CPR and a code was called. The compressions went on for 10 minutes without him responding so a heart and lung bypass machine, i.e. life support, was ordered. Abel's guardian angels were watching over him that night. Once again, the baby’s life was saved from a potentially fatal outcome. It was decided Abel would now be in the PICU where he could receive constant care. On the morning of April 21st, Abel was officially added to the heart waiting list.
Wendy recalls, “At this point you have no control over your excitement but we learned after several days you just have to be patient. We tried so hard not to freak out every time the phone rang, thinking it was THE CALL. Abel remained stable and intubated while we patiently waited. We rarely got to hold him because it would stress him out and cause his blood pressure to rise. This was very devastating for us but we had to stay positive and keep the faith. Mother’s Day passed … all I was hoping for was a new heart for my son.”
“On the morning of May 18th around 7:15 I attended cardiac rounds outside of Abel's room just like every other morning. I expected there to be no new updates so I did not record it like I normally did. They started presenting Abel's case talking about his meds, feeds, how he did the night before … I was tired and my mind started to wander. Then our transplant coordinator spoke and caught my attention. She said Abel did in fact need an X-ray that morning and needed to go NPO (nothing by mouth). The doctor asked her why and she said, "Because he's going to the O.R." Me, still clueless, asked, ‘Why?!’ "WE HAVE A HEART," she said.
Abel’s heart transplant was tentatively scheduled for that afternoon, which turned into that evening and then into the next morning. Abel went into the operating room at 2:00 a.m. on May 19th. Wendy updated family and friends via a series of text messages:
3:38 a.m. – Dr. Hammel just came in to say he is about to get started prepping Abel for when the heart arrives. 4:01 a.m. - Heart is in the air.
4:45 a.m. - Heart has landed (at Eppley) should be here in 30 mins. Abel is doing great and things are going as planned.
5:47 a.m. - (Picture messages of the surgery and of Abel's old heart - they brought it in for Jason and I to look at in person.) Wow. Just wow.
6:06 a.m. – It is in ….and it is pink and beating … and it fits!!! Started beating on its own!
Abel was only on bypass for 106 minutes and in surgery for a little over two hours, which was absolutely incredABEL, according to Wendy. Abel came off the ventilator four days later. He immediately looked happy. He was smiling, yawning and coughing -- things he had not done in over a month.
On June 7, 2017, a COTA representative flew to Omaha to officially train a group of friends and family members who were actively fundraising for transplant-related expenses. Wendy and Jason took Abel home on June 10th -- 22 days post heart transplant.
“Our team of amazing volunteers has organized several COTA fundraisers in honor of Abel,” Wendy said. “COTA has been such an important part of our family’s transplant journey. COTA has been here to support us emotionally and financially. COTA’s staff members have been a source of compassion and encouragement for us and our volunteers. COTA stepped in and became a source of hope for our family just like they are for other transplant families throughout the nation. They have been such a crucial part of Abel’s journey -- we even received several calls from COTA’s President.”
“We are incredibly grateful that COTA will be by our side throughout this lifelong journey,” Wendy said.
Today Abel loves being outdoors, loves his riding toys and loves his puppies. He has continued to grow and thrive. Wendy says his medical team is amazed by his recovery. The Protivas have gone from tri-weekly appointments to only going to Children’s Hospital of Omaha every six months. Abel sees feeding specialists monthly but is working hard to get his G-tube removed. The daily medications originally sent home with Abel have been cut in half over time, and his last two heart catherizations have come back with zero rejection.
Wendy is excited the family, including big sister Kaya, are finally able to do things ‘normal’ families do like take vacations, go on bike rides, go to the zoo and enjoy holidays with their extended family members. Abel welcomed a new little brother with open arms in August 2018. He and Deacon have become the best of friends. Abel is so helpful and gentle; Wendy is confident his strength will inspire his brother as they grow older.
One of the family’s biggest highlights of 2018 was meeting Abel's donor family. “We had the most wonderful time getting to know them yet, we hardly scratched the surface. We look forward to a lifelong friendship and hope to somehow thank them for the gift of life received Abel received. We were completely heartbroken to learn of the sudden loss of their daughter, Pressley, and are confident we can lessen their grief with the promise of a full life renewed. Pressley shines through Abel every day,” Wendy said.
This Valentine’s Day, Abel will be eating his favorite foods and doing his favorite things, which will undoubtedly include running, laughing and playing with baby brother, Deacon. Wendy and Jason will be remembering Abel’s heart donor angel, Pressley, with love.