The McCathran Family: IMH National CHD Convention

This past weekend Ty and I were able to be involved in the It's My Heart National CHD Conference in Houston. I had the very small job of manning the registration table Saturday morning, and Ty helped with conference logistics. We had the honor and privilege of spending time with and getting to know Paul Cardall and his family. Paul is a professional musician (pianist) who was born severe CHD and this past September received a new heart via a transplant. He's had several surgeries throughout his lifetime, but a couple of years ago, his options had run out and he was told unless he received a new heart, he wouldn't live over a year. About a month after that deadline, he got the call and had a successful transplant. At the conference he spoke about spreading joy & hope to others no matter the circumstances and the value of having an optimistic view of life with a strong Faith.

He is currently working on a book about his experience (we'll be posting more details about this soon). Check out his blog at www.livingforeden.com.

Paul brought his wife Lynette and daughter Eden with him for the weekend. Not only was everyone at the conference blessed by hearing Paul's story and music, I feel like Ty and I made some dear friends this weekend. Lynette and I hit it off right away and their 4 year old Eden is just adorable.

I often say that I feel God has blessed Jake with such a pleasant spirit because of what he knew he would have to endure. I feel like Jake will be a CHD survivor who strives to encourage others as well. Ty has definitely done just that. He puts so much time and energy into CHD awareness and has imparted his wisdom from his CHD story as well as from being a CHD parent to others.

The conference definitely filled me with hope. It is always comforting to be in a room full of people who are experiencing similar situations. The main speaker of the day was the chief surgeon (former chief of pediatric heart surgery) at Texas Children's, Dr. Fraser. His message explained how very far congenital heart surgery has come. He reassured me that we indeed are in the right location with Jake. TCH is at the cutting edge of new technology and procedures. They are one of the only heart institutes that actually pumps blood to the brain during heart surgery. They've found that this can reduce brain damage and are presenting papers on this topic this summer to other institutes. In children with Hypoplastic Left Heart Syndrome which 20 years ago was a fatal disease, now Texas Children's has a 96% survival rate with surgery to repair the defect. In a startling statistic Dr. Fraser gave, in 108 of the top heart institutes in the country, 24% of them still send children home with only "comfort care" with this diagnosis and and are not confident in even attempting to repair the defect through surgery. This is just one example of how much work is left to be done. It also reminds me of how important it is for the parent to a strong CHD advocate for the child. Jake does receive care at one of the top heart hospitals in the country, but we must be ever diligent to make sure he always receives the best advice and the most up to date care. It also reinforced how important organizations like IMH are who spread awareness for CHD. There is hope in knowledge.

At the conference we will also blessed to meet two people who came to represent Camp Bon Couer which is a summer camp for cardiac kids in Louisiana. They have camp each year for kids 8 and up who have CHDs. They also have a family weekend camp every year which we're already excited about attending.

What a wonderful weekend of hope, comfort, awareness, and new friendship.