He’s six, and he’s our miracle.
We never imagined we would raise a son with a heart transplant, or one with special needs, but, after everything we’ve been through together, we honestly wouldn’t have it any other way. On August 27, 2008, our lives were flipped upside down, sideways and every other way that you can imagine. Richard and I were brand new parents to the most precious blessing on earth, our 31-week-old preemie diagnosed with Hypoplastic Left Heart Syndrome (HLHS). We named him Leighton Clement Harper, and he began his life as our tinman… a little boy in need of a new heart.
We found out at our 20-week ultrasound that Leighton had HLHS, a congenital heart defect that causes the left side of the heart to either not grow, or form incorrectly. Finding this out so early in my pregnancy was devastating, especially after we Googled stories about other HLHS kids. Story after story had a tragic ending–either that, or they were always followed by the dour phrase: “We have a long road ahead.” There were many days where I would sit and cry, wishing my baby was healthy. Since HLHS is genetic, there was nothing Rich and I could have done differently to cause a healthy outcome. All we knew was that we were in love with this boy from day one, and would do anything and everything in our power to make sure he grew up as happy and as healthy as possible.
Leighton began his journey at UAMS in Little Rock, AR. It had been decided early on that he would be delivered there in order to be close to Arkansas Children’s Hospital. He was just a little too eager to enter the world, and I had to be transported by helicopter, already in labor, two months early. His life was at risk more than ever now–not only did we have a baby with half a heart, but a tiny preemie, too. Leighton was only 3 pounds and 9 ounces. No baby born with HLHS this early, this small had survived… Ever. My husband and I truly believe in miracles, so we fought for his life and decided to continue with medical intervention. For one amazing moment, we were able to touch his fingers in the incubator before they took him to ACH. He was intubated, and had all kinds of life support wired into him. He was a beautiful baby–just beautiful. We didn’t see his eyes for a few days, but when we did, they were blue as can be. His skin was flawless, his hair red. Despite the situation, I couldn’t help but feel an equally beautiful joy grow within me as I kissed his little forehead and played with his toes.
The NICU was his home until his first heart surgery. His heart was the size of an acorn on that day. I remember running my fingers along his chest, knowing that this was the last time I would see him without a long incision scar. `The night before his surgery, his NICU nurses made footprints for me, and were very kind and respectful of our time with him. We had faith that he would make it through this surgery, but we couldn’t help remembering how we’d been told that he was the smallest to ever have this particular surgery, a Hybrid Norwood. This was the first step in a total of three surgeries planned to make his half of a heart function as much as possible. We knew there would be more surgeries ahead, along with the chance of a heart transplant. If you would have asked me on day 10 how long we would be at ACH, I would have answered only a couple of months, tops. In the end, however, our family spent a total of 210 days in Little Rock. Despite that, there was never one day that Leighton didn’t have a family member by his side.
We lived in the CVICU for 200 days and moved rooms quite often. Leighton had many highs and lows, dozens of steps forward and steps back. He was on a ventilator to help him breathe for almost three months, and it took what seemed like forever to wean him off. They diagnosed him with chronic lung disease. He was fed through a feeding tube in his nose, but eventually was given a ‘nissen,’ which is a feeding portal in his belly that goes directly to his stomach. The nissen was a procedure meant to help with his acid reflux issues. We were told that he would never be able to burp or throw up. Boy, were they wrong! As Leighton began to grow, the doctors began to discuss his second surgery, the Glenn. This surgery was to be a very invasive surgery where Leighton would be put on bypass while they operated on his heart. Leighton was sent to the cath lab, where the technicians would look, in detail, at his heart and see what his surgery would need to entail. Richard and I received the call as he was still in the cath lab that the right side of Leighton’s heart was too weak, and he was in need of a new heart. He was listed as a 1A on the waiting list.
On February 5th, 2009, at 5 months old and after waiting only 5 days, Leighton received the greatest gift on earth: a heart. We were so blessed to have an angel with the perfect heart send this gift to our son. Without that perfect heart on that day, we might not have our son today. God’s timing was perfect. It was one of the hardest, yet most wonderful, days of our lives. As worried and scared as I was, my family helped give me peace. I never could have made it through the surgery without my husband by my side. He was as scared as I was, but always seemed cool and collected, which helped me be strong, too. We both cried as we took him to the operating room, and held each other through the whole surgery. Our friends and family were there for support, and I will never forget the sigh of relief the whole waiting room gave when we were told his heart was beating on its own.
Leighton came home two months later. It’s amazing what a new heart did for him! I will never forget how many babies and children we met while at ACH who did not go home. I am reminded of how blessed we are to have such a great hospital in the state of Arkansas for heart issues every time I look at Leighton.
We brought home an eight-month-old who was basically the size and maturity level of a newborn. He began his time at home taking 13 medications and, over the years, has come down to about six a day. Our home was prepared for him in many ways. We put in a hospital-grade air filtration system, pulled up all the carpet and replaced it with wood, and set apart three cabinets in the kitchen just for Leighton’s medications and medical equipment. We also have the world’s largest supply of hand sanitizer. To this day, if you enter our home, you wash your hands. This rule has helped keep Leighton, and the rest of us, healthy.
Leighton has had very few health complications over the past few years, but, when he gets sick, it’s usually a pretty big deal. He had RSV when he was very young, and the only way we we were able to keep him out of the hospital was with daily doctor visits and, every hour on the hour for four days, checking to make sure his nose was clear. Leighton’s local doctor is wonderful. Dr. Youngblood at Mercy takes extra caution and really focuses on his health. Leighton had urinary reflux for one and a half years and was on a daily antibiotic. When he was taken off this antibiotic, he began his three-year journey with ‘C-diff,’ a bacteria which, in Leighton’s case, caused chronic diarrhea. After seeing multiple GI doctors and infectious disease specialists at ACH, we cleared it up, and C-diff hasn’t been back since. In 2011, Leighton’s team decided he needed his tonsils and adenoids taken out because they were oversized, making breathing difficult. Elective surgeries for transplant patients are not usually advised due to the risks, but this was an important surgery for him. While recovering from this surgery, Leighton aspirated belly acids and ended up with double pneumonia, back on the ventilator. This was our only other stay at ACH, but it was a grueling four-week battle for his lungs.
Our family has worked very hard to keep Leighton healthy and out of the hospital. First and foremost, we make sure that we are all up-to-date on our immunizations. Leighton gets all the dead virus immunizations, but is unable to get any of the live virus immunizations, which is tricky. Rich and I stay up-to-date on ours and anytime our other kids have to get a live virus vaccination, we have to have an incubation period. For example, when our daughter, Shea, received her rotavirus vaccination, we had to keep our kids away from each other for two full weeks. Needless to say, that was not a fun two-week stint at the Harper house. Leighton wears a mask any time he is in a doctor’s office or hospital. He is homeschooled and given home therapy. Of course, here in NWA we have a wonderful public schools system, but it is not right for Leighton. Our other kids will attend public school, but Leighton will continue to stay home. After I work all day, I come home and shower first before interacting with Leighton to avoid the risk of spreading germs. We often forget that Leighton is “sick,” because we are so used to what we do on a daily basis for him to keep him safe.
A typical day for Leighton begins at 8:00AM. Rich wakes him up, gets him dressed and gives him his morning medications through his feeding tube. He is fed Pediasure five times throughout the day through his tube, and he attends three hours of therapy at Imagine in Centerton two days a week. His time at Imagine includes speech, occupational therapy and physical therapy. He then comes home and begins more therapy. Leighton spends a total of 20 or more hours in in-home therapy. His therapy ends around 4:00 or 6:00PM each day. He loves each of this therapists, and always greets them with a high five and smile, and blows kisses to them when they leave. His Nana, also known as my mom, Linda, is his third caregiver during the week. She not only takes wonderful care of him, but is also the best Nana a family could ask for. Leighton’s favorite rewards at the end of the day are calling his papa on the phone, watching Ellen or Jimmy Fallon on his Ipad or, in the summer, going swimming. He loves music and navigating on the Ipad, so his therapists are working on an app to help him communicate better. Right now, he knows many words, but doesn’t speak in sentences. As his parents, we usually know what he wants when he asks, but we would love for his communication skills to improve. Leighton gets his evening medications around 9:00PM, and is fed his last meal around midnight, through his button while he sleeps. Throughout the day, we offer him food and sit down once or twice a day to have him eat orally. He also throws up about 10-15 times a day, something his doctors said he would never do. He did have a surgery to prevent this, but it only made it worse. This has just become another part of our normal day. Leighton is now sleeping in his own room through the night, and wakes up ready to start another day.
Leighton now has a little sister, Shea, who is 11 months old, and by the time this article is printed, he will have a baby brother, Griffin. As parents of a child with a congenital heart defect, we knew there was a small chance that our other children would have heart issues, but our faith stepped in, and we knew we wanted a bigger family. At Shea’s 18-week ultrasound, we saw the most beautiful image: a four-chambered heart. Leighton has already grown to love his baby sister, and learns from her everyday. They play together, cuddle and mock each other. It’s difficult and strange, getting used to having a healthy child. Things are so new and different. Leighton took his first steps when he was three years old after years of therapy, while Shea began walking and chasing Leighton at nine months. Leighton doesn’t love food in the least, and Shea is the complete opposite. It’s so crazy having a child that wants food! We’re happy to say that Griffin also has a full heart. We are excited to welcome him to the family and give Leighton another playmate.
One day, Leighton will reject his heart, and he will need another transplant. One day, his kidneys may give out due to all of his anti-rejection medications, and he will need a transplant for them, too. One day, and soon I hope, we will get rid of his feeding tube and he will eat enough orally, and even enjoy it. Leighton will probably always live with us due to his special needs, but he is happy. All we can ask of him is to do his best, and all we can do for him is make sure he is healthy and happy. Many people make his life special every day, from our family and friends, to his therapists and favorite babysitters. We never take a single day with him for granted and he has taught us to do the same with all of our family members. Our tinman has taught us so much… Life is precious. Believe in miracles. Love your family with all your heart, and… become an organ donor.
by: Laine Harper / Photos by: Katie Cole Photography