PeekabooNWA

Our Little Tin Man… Got his Heart

Posted on 01. Jun, 2009 by admin in Personal Stories

A lot of faith and a little luck. That is how I would describe our family’s journey since our last ‘Tin Man’ update in December.
This is an update to “Our Little Tin Man.” The story ran in the December issue of Peekaboo and we have been overwhelmed by the number of readers interested in an update. If you would like to read Part 1 go to Personal Stories.

On August 27, 2008, we welcomed into the world our son Leighton. He was eight weeks premature, with Hyperplastic Left Heart Syndrome (a congenital heart defect where the left side of the heart never develops correctly and is fatal without either several major surgeries or a heart transplant). Leighton fought heart failure, chronic lung disease, and various other health problems for five-and-a-half months before the doctors finally decided that further surgical intervention would no longer be a viable option for his heart. After several discussions with the cardiology team at the Arkansas Children’s Hospital, Laine and I had started to warm up to the idea of a transplant. We were hesitant, but we knew that even though he looked good to us on the outside, inside his little heart was ‘very sick.’ As the doctor put it, his heart would not last much longer. Heart failure is a very hard thing to watch, even more so when its your own baby who is experiencing it. During this time, life never seemed more real, or precious, or short. Aside from the 105 degree fevers and 220+ heart rates we watched Leighton endure, just knowing that at any time his little heart could give out made every minute of each day heart-wrenching. Also, not knowing if Leighton would even be a candidate for heart transplantation also made his future that much more uncertain. After blood work and other various tests, Leighton was approved for transplant on January 31st.

(Following passage taken from Leighton’s caring bridge journal www.caringbridge.org/visit/leightonharper)

“It’s amazing how much things can change in a week’s time. About a week and a half ago we had the possibility of going home for several weeks or even a couple of months before bringing us back in for Leighton’s 2nd stage Hyperplast procedure. Now here, a week and a half later, we are being listed for an immediate heart transplant. I guess things never stop changing in the life of a heart baby. A cath lab procedure confirmed what our Doctor had admittedly been concerned about: Leighton’s heart function was declining to the point that they no longer felt that it could be repaired effectively.

If we can get just this one little piece of him fixed, everything else will work just fine. I do notice now how much his little body has changed in just the last week and a half. His fingers and hands are blue most of the time. It just looks like his body is trying to fight something on the inside. He is a fighter after all. His room is decked out about as cheerful as one here can be and all day he loves staring up at his mobile.

Just five days after Leighton was listed for a transplant, on February 5th, I was at home taking care of a few things and trying to finish up Leighton’s nursery when I got a call that would change my life forever. Somewhere on that same day, another family in some other city had lost the fight to save their little loved one. They were saying goodbye to their little boy or girl and foregoing the last few precious moments they had with him or her in order to save another life: Leighton’s life, our son. A heart was on its way.

As a parent, just the thought of having to make that decision on your own would be too much to bear. We found out that neither the hospital or staff is allowed to ask you about organ donations; that conversation must be initiated on the families end, so, again, making the decision to give your little one away to a group of surgeons and doctors instead of holding him/her, spending those last few moments with their child, and being with them when they pass on to a better place is an act of selflessness I’ve only begun to understand.

I drove back to Little Rock that night, making calls to family in Georgia along the way and arrived back at ACH around 3am. They told us they would come to get Leighton at 7am so we spent most of the rest of the night standing over him talking, playing, trying not to think of the worst, and praying for the best. We walked with Leighton as they took him away to surgery. He was, of course, awake (as he always was before a surgery) and looking at us the whole time. We kissed his forehead, fought through tears to tell him how brave he was, and said not to be scared. We told him that we would be waiting for him just down the hall. Eleven hours later Leighton was out of surgery, stable, and doing well except for a brain bleed that developed during bypass which he had to undergo another surgery to correct.

Roughly six weeks later, on day 210 of Leighton’s life, he was discharged from the ACH and finally got to come home and be with his family. He has been doing great ever since. Leighton has been the most amazing Angel we could have ever hoped for and has overcome every obstacle imaginable an 8-month-old. His road ahead is unknown, as is every transplant patient’s. The nature of the medications that they have to take for the rest of their lives makes them very susceptible to anything that an immune system would normally fight, such as cancer, etc. Also we know that heart transplants do not last forever and need re-transplanting after 10 to 15 years. What does that change for us as far as today goes? Nothing. We are just happy and blessed to have the time we do with our son, no matter how long that may be. Our little tin man got his heart and we got him.

- Daddy
Story by Richard and Laine Harper
lainevirtue@hotmail.com