PeekabooNWA

Our Little Tin Man

Posted on 28. Nov, 2008 by admin in Personal Stories

What a year 2008 has been for us. We celebrated our 3 year wedding anniversary (our 9th year dating anniversary). We incorporated Laine’s dance studio which had been doing great and I was really excited about the future of my financial advisory practice. Last but not least, Laine and I found out in late February that we were pregnant with our first baby. We were just like every other loving parents who had found out that they were going to have a little one in the house. Our biggest question waiting to be answered now was whether or not we would have a little boy or a little girl.

We had the 20 week ultrasound on a Monday. I can still recall how exciting it was to know that I was going to have a son. Laine and I both talked to peanut (that’s what we called him before we knew it even was a him) each night before bed. We spent our nights playing him music and thinking about what kind of person we hoped he would turn out to be. However, two days after we learned that we were having a boy we got a call from Dr. Smith’s office (our OBGYN at Pinnacle Women’s Health) telling us that they wanted us back in asap to discuss a problem with our ultrasound.

What Dr. Smith had caught, which was later confirmed by a specialist in Joplin, was that our son Leighton had what was known medically as Hyperplastic Left Heart Syndrome, a condition in which the left side of the heart (the side responsible for pumping blood to the rest of the body) was not forming and that without major surgical intervention after birth is 100% fatal. The only treatment for it is a staged series of no less than 3 open heart surgeries that will essentially turn his 4 chambered heart into a 2 chambered heart (single ventricle) and/or a heart transplant. The harsh reality is, even with the 3 stage treatment it is only temporary and will inevitably end in a transplant regardless. Transplants are only temporary often requiring retransplants after several years. Laine and I, in a mere 10 minute conversation with our doctor, lost all of the excitement and joy that we had as new parents. Our nights were now filled with Google searches trying to make sense of the condition our little guy was going to have (the most severe congential heart defect a baby can be born with). Every spare minute was spent trying desperately to get an idea of just how much our lives were going to change. After two months of coming to terms with what was happening we left for a brief weekend getaway at Big Cedar Lodge. It was there, at our place of refuge, that Laine went into pre-term labor 8 weeks premature. We rushed from the hotel at 2:30am and just a few hours later she was being air-lifted to UAMS in Little Rock.

The Neonatologist that spoke with us the night we got there told us there was going to be little hope for Leighton since he had never seen or heard of a Hyperplast, 31 week gestation preemie live. He gave us a couple of very hard options to discuss. On the one hand they could continue with treatment, which was considered very aggressive for such a little baby, or we could give him comfort care and just be there with him until he passed. Laine and I took little time to tell the Dr. that we believed in miracles and we were not yet ready to give up on our little guy. We wanted the doctors to do everything they could for him. If it began to look like we were doing more harm than good then we would reassess, but right now we had full faith in our little boy. We thought Leighton was coming that night but he and Laine held on for 4 days of labor until it was more than Laine could bear. He was born on Wed. August 27th at 9:03pm at 3 pounds 10 ounces. He was rushed away from us immediately and brought back in for a short 5 minute visit before being taken over to the Arkansas Children’s Hospital less than a mile away. He was so small but so beautiful, pink, and looked so perfect to us. The EMS nurse let down one side of the clear transport box they had him in so that we could touch his little hands and almost immediately he grabbed onto both my and Laine’s fingers as if to say ‘I am ok and I love you’. It would be more than a month before we were allowed to hold him for the first time, but he has made it through 2 heart surgeries so far. Leighton celebrated his first Halloween dressed appropriately as the Tin Man.

We are now at a crossroads of sorts where the doctors are not too confident in his heart’s ability to keep up with his body’s needs (he has had congential heart failure each time they take him off the ventilator, a leaky tricuspid valve, and a recent collapsed lung) and the conversations of late are beginning to lean towards a transplant. So much has happened to our little guy, ourselves, and our lives over the last 75 days. Everyday is so up and down and we have had to give up everything but the essentials in our lives (making the mortgage payment has become a delicate balancing act), but we have never experienced the kind of love and support we have been shown by our friends and loved ones. They have shown us that while Leighton is our baby he belongs to a much bigger family than just Laine and myself and he has already touched so many lives. Leighton’s future is still unknown at this point as we wait for more time and tests to go by and come in, but the one thing we can say that we are most proud of is that Leighton Clement Harper knows who his Mom, Dad, and Grandparents are because we have been by his side everyday he has been with us and he is never alone.

For more information about Leighton please visit our website at:
Caringbridge.org/visit/leightonharper

A fundraiser will be held in January to help the Harper family out with medical costs and expenses. Information will be posted on their website shortly.