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 when 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 was only 3 pounds and 9 ounces when he was born. 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. If you had 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.
On February 5th, 2009, at 5 months old, 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 that 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 have told our story of Leighton Harper and our family’s journey many times, but, there is another side to this story that we are now able to share. It’s the life of Omar and our new family.
It’s Saturday, January 31, 2009, and I’m hanging out with my brother and his family in Haskell, TX, having a pre-Super Bowl party, when my phone rings. It’s my son’s mom, Yolanda, crying, telling me through her tears that my son, Omar, is having trouble breathing, and she doesn’t know what to do. The ER has already sent her home twice. The doctors have diagnosed him with RSV (Respiratory Syncytial Virus), and told her to simply give him breathing treatments. They have reassured her that he will be okay.
I wanted to be there to help her, but, since I was five hours away, all I could do was encourage her to take him back, even if they did send her home. About three hours later, she called me back to say that his RSV had worsened and they were care-flighting him to Amarillo, TX. While preparing for the flight, however, something happened while they were sedating him. The team thought that they might have overdosed him, which caused his heart to stop for five whole minutes. I told her that my car had broken down, but that I would be there as soon as I possibly could.
My adoptive parents, Lee and Mary Silva, showed up at 5AM and drove me the five hours to Amarillo. We spent all day that first day in February in the ICU, with the doctors running numerous tests, trying to figure out what went wrong and why his heart had stopped beating. As I was driving to the store to get something to eat, I got a phone call that I had won $1,000 on my football square for the Superbowl. Something that would have been such an exciting call before, now meant nothing to me. How could I get excited about anything when my son was fighting for his life?
I prayed incessantly for the next two days, without any progress in Omar’s condition occurring. We met with a priest, and decided to leave it in God’s hands. The doctors finally decided that there was nothing else they could do. That five minutes when his little heart stopped beating had prevented oxygen from getting to his brain for too long.
Once the doctors made that decision, our next visitors were from Life Gift. They wanted to share information about organ donation. I had never thought about organ donation – especially for one of my kids. They were supposed to live longer than me! I was on the fence, and his mom was leaning more toward “no.” She couldn’t imagine someone cutting her child. So, again, we went to prayer before discussing it. I looked at Omar. Then I looked at Omar’s Aunt Vanessa, who was 7 months pregnant. I said to them, “What if Omar’s cousin needs an organ when he is born? Or, how would we feel about organ donation if we were the ones in need?” After that, we made the decision to donate his organs.
They took Omar off all the machines, and he passed away on Wednesday, February 4, 2009. The next few days were spent wondering how somebody so innocent and full of life could be gone so early. At the same time, I began wondering if his organs would help save anybody. February 9th was the hardest day of them all, though… no parent should have to watch their child being lowered into the ground. I knew the only way I would be more at ease with the situation is if I could find out if he was able to live on by saving a life. I spent the next five years trying to write a letter to his recipient family, but I could never seem to finish it. Finally, five years after the biggest loss of my life, I finished that letter and sent it out. Now I would endure the process of waiting and waiting, wondering if the letter would reach them. All I knew was that Omar’s organs were able to save two lives.
I emailed Life Gift asking them if they had heard back, or if I needed to write another letter or do something differently. Then, sometime in 2015, I heard back from Life Gift letting me know that they had found one of the recipients, but that he had passed away. The recipient had lived another four years thanks to Omar, but, after his passing, his parents went back home to their country.
While I was happy that he lived longer so that his parents got to spend more time with him, I was sad that I didn’t get to meet him. I didn’t know if I could handle trying to meet the other organ recipient, with the same thing happening, so I stopped trying to find them. Then, in May of 2017, I started trying again. On August 3, 2017, I got a message from someone asking me if I was Omar’s dad, and if I was ready to talk about Omar.
Just reading that message gave me new life and hope… my prayers were answered! It was Omar’s heart recipient’s mom, Laine. We messaged back and forth for a few hours, and she told me that her son’s name was Leighton, and sent me pictures. I cried tears of joy, because I could see Omar in Leighton. The hair, the look, the smile. I called her, and it was an instant connection – I felt like I was already part of the family, and that made it all worth it. Then, on August 25th, I finally got to meet Leighton and his family, and hear and see Omar’s heart beating strong in Leighton.
That was a very emotional day, and the happiest day that I have had in a long time. Meeting all of Leighton’s extended family was so special, because they all became our family. We celebrated Leighton’s birthday, and had a candlelight vigil for Omar, which they surprised me with. Even now, I stay in close contact with Leighton’s family. I message one of them almost every day.
When you check the ‘yes’ option in the organ donation box for your driver’s license, please know that you are checking ‘yes’ to becoming somebody’s family. If we hadn’t made that decision to donate Omar’s organs on February 4, 2009, I don’t know where I would be, emotionally. It never gets easier when you lose a child, but now that I know that somebody else’s child is living on because we made that hard decision, I feel peace and comfort, especially since I know that Omar is still living on, and still touching peoples lives.
I remember the day when I finally got an answer back from a message I had sent to many different Walter Williamses: “Are you Omar’s Walter?” This answer was different from all of the others. It was a yes! My heart was full of butterflies and joy when I found him, and after speaking to him once, he was 100 percent our family, immediately. Two weeks later, Walter and his family came to visit for Leighton’s birthday. This was one of the very best moments of our lives.
It was a sunny day as Leighton and I stood in the 21C surrounded by modern art (perfectly reflecting the modern medicine that saved our son). Walter walked to us, and Leighton smiled immediately. I was very nervous. Would this family approve of us? Are we worthy of receiving a heart from their son? Will they want a relationship with Leighton? Nerves were immediately calmed when I saw Walter’s tears. He held Leighton and cried. Being the emotional soul I am… of course I joined in.
I had made special arrangements for that day. Thanks to my friends at Northwest, our families went together to the clinic and, instead of just letting them listen to his heart through a stethoscope, we showed them Omar’s heart on an echocardiogram. I have seen ECCOs hundreds of times since Leighton was born, so I didn’t expect my reaction. I saw Walter watch the screen, revealing the heart that links my son to his. This heart pumps perfectly in his tiny body, and the ECCO reflected that. We all stood in the clinic and cried tears of joy. What an amazing gift. What an amazing day. We held a candlelight vigil at Leighton’s birthday party in honor of Omar. We prayed and spoke of how Omar had blessed each one of us. 45 people stood around our pool, all crying happy tears of love.
Our relationship with Omar’s mom, Yolanda, began in December when we met her in Dallas during a dance competition. This was another special weekend. Not only was it my birthday, but also the first performance of a dance dedicated in Omar’s memory. A dancer from my studio performed “Omar’s Gift” as we all held hands and cried during the performance. The words from the song “How rare and beautiful it is to even exist,” hit home. We all know what it means, but to see, hear and feel it all at once was a true honor and a completely overwhelming feeling of joy and pain. Yolanda and I held hands and hugged over and over. We are family. Because this family chose for Omar be an organ donor, though they lost a huge part of their lives, they gained a full family. I am beyond blessed to share our story.