Christopher

Christopher has dilated left ventricular non-compaction cardiomyopathy. It is a very rare and new form of PCM. Basically in layman's terms, it means by "Dilated", his heart is enlarged; "Left-ventricular non-compaction" is when a baby is in utero, the heart is like a sponge, many tiny holes, but by the time birth an unaffected child's heart will solidify into a solid muscle. Christopher's heart did not do that. "Cardiomyopathy" means weakness of the heart. His heart is blown up bit, and like a soccer ball, kind of quivering instead of the normal throb or pump of a heart. Nothing is missing or out of place, so surgery cannot correct this.

We were told that the only option was heart transplant and that was a trade off for another set of problems. The stats given to us for his survival on the long end would be ten years and that was if he lived through everything, and no rejections. In and out of the hospital the whole time, and on horrible anti-rejection meds. My husband I decided that quality of life versus quantity was more important to us. I just wanted to take my baby home and make him comfortable during his life here no matter how long or short. God has the last say so regardless.

We also feel like his life has been extended by the grace of God for giving our faith to Him. If and when God takes him, if we live right, we can go to him. I feel like we are really close to finding a cure for this with more research and awareness of the disease. He was given less than six months prognosis and was a hospice patient until the age of 15 months. He made an unexpected improvement in the function of his heart that doctors cannot explain. I attribute this to our faith and the fact that God is still in the miracle business.

Christopher has made the news several times mainly because he has such an intriguing story of hope. The least I can do to give back is try to support other affected parents and try to spread CHD awareness. I have been able to have a proclamation granted by our state governor and we (Mended Little Hearts, a newly founded support group here in Mississippi) hope to do many things this upcoming CHD Awareness Week 2010.

February 2009 Update

Christopher was just given a new diagnosis of Barth syndrome and this is what caused his cardiomyopathy.