For nearly a week now, I have been working with Liam Lyons family through Shawn's Anomaly. If you have not had the chance to follow the posts on www.shawnsanomaly.org on the right side of the page, Liam Lyon was born nearly 16 months ago with 1/2 a heart. He had a heart transplant at 6 months old that should have saved his life, but he has had complications with it every since. Liam's family has been trying so hard for months to get Liam in to Texas Children's Hospital so he could get the care of some of the best doctors in the world, but they have underwent major hurdles to get him transferred. Most of the reason that the transfer has not happened is because they have not been able to find an accepting doctor at TCH. Of course, that got me involved because I know how great TCH is. I mean, they saved my son's life! I just did not understand why they were not allowing Liam to come to get treatment. Of course, you can't fault anyone at TCH for not wanting to accept Liam. After all, Liam is really getting very good care at The Children's Hospital at St. Francis in Tulsa, OK by Dr. Barton. I don't envy his job at all. He has done a lot since Liam was transferred into his care from Arkansas Children's Hospital pretty much as a hospice patient since the surgeries and Liam's current position does not make him a candidate for another heart transplant. Unfortunately nothing has seemed to work. You would have thought he would have given up a long time ago, but Dr. Barton keeps pressing on for Liam and trying everything possible to help. He has tried already to get Liam into TCH, but unfortunately the decision was made not to accept transfer because they felt there was nothing else that TCH could do better. I cannot fault their decision at all.
Recently, they found that there is now a hole in Liam's trachea from the tubes they put down his throat to help him breath. This of course changes everything because now the ENT doctors at Tulsa do not feel comfortable performing the very risky surgery on Liam to fix the hole. Again, Dr. Barton has requested that Texas Children's Hospital to accept Liam now hoping that a doctor at TCH will be more willing to perform this extremely risky surgery. After all, how many doctors do you know want to perform a surgery on a child just to watch that same child not make it out of surgery. The chances are very low that they will find a doctor who will be willing to accept a transfer at TCH, but at least TCH is considering it.
The transfer to TCH would really be great for not only Liam, but the family. I know that they have been through a lot in the past 16 months. Liam's Aunt already lives here in the Houston area and has really been leading the charge, but you can tell in her eyes that she is tired. They are all exhausted, but they don't give up on Liam. You can also see in Liam's eyes that he is a fighter. He does not want to give up either, so because he doesn't, the family doesn't either. They are praying daily for a miracle, and now so am I.
As parents you may sympathize with their situation, but you may never understand how hard it is and how alone you sometimes feel during the process. I pray daily that you don't. My wife and I do, and just sharing our story and our experiences with Liam's family seems to help. We can't do much financially right now through Shawn's Anomaly because we are just getting started and the donations just don't seem to match up with what I would love to offer them, but we are trying our best to be there for this family and others just like them. After all, that is what Shawn's Anomaly is really all about. It is not about finding a cure for Shawn's conditions or about saving kids lives. That is what the hospitals are for. Shawn's Anomaly is about providing education, hope, and help to the families of these children. We want to let them know they are not alone and there are other people who have, "Been There, Done That!" That statement, believe it or not, goes a long way.
I often feel that I don't explain that mission better, and for that I hope that you will truly accept my apology.
I realize now after seeing what I have written, it would be crazy for me to continue and tell you the other reasons why I can't sleep in this post, so with that being said:
To Be Continued...
In the meantime, I ask you to pray for this family, pray for the decision that TCH is currently underway making, pray for Liam, and lastly pray that I get some sleep. I am going to be useless to this family and other 1-in-30 families that are dealing this birth anomalies if I can't get any sleep.
