On Tuesday, Chris and I had an appointment with Dr. O'Brien and Dr. Shah as well as Dee, Will's social worker. Going over an autopsy with parents has to be one of the most difficult parts of their jobs....and as parents, it was one of the hardest things we ever will have to do. While driving downtown, I struggled with nerves while Chris remained cool as a cucumber. He was aware of what we were doing, but he was ready to hear what was going to be said. I was so jealous of his calmness!!!! The meeting with William's doctors could not have gone better. Will was truly our strong-willed warrior. All cards in the deck were stacked against our babe! And, we were and will continue to BLESSED by the little red head that we call son.
My mom told me that she was so proud of us for making the decision to have an autopsy done. Not having an autopsy of Will's heart and lungs ever crossed our minds. I am a nurse who always wants to learn more as well as teach someone else. And, Chris is a carpenter. He puts together all kinds of puzzles everyday--analyzing piece by piece and how they all will fit together. And, then he puts into action all the pieces to make a masterpiece. (If you have seen my driveway, it's a masterpiece of concrete work!!)
We wanted to know what went terribly wrong on September 22nd as much as the hospital staff did. But, we also needed to know that Will's life would live on in our minds forever as well as teach so many more people. And, once again, William succeeded. I have heard that each child is one in a million--that there is no one just like another, similar yes but the same no. Maybe elements of the others melt together but each varies....well, William Howard definitely did just this. He didn't look exactly like either Mackenzie or Carson, and he definitely broke the medical mold! TAPVR in itself is rare 1 in 15-20,000 babies are born with it, and less than 1/3 of those TAPVR kiddos have his infracardiac, infradiaphragmatic kind. So...RARE BIRD! But, even more RARE was the fact that he had another disease process as well. Pulmonary Venous Obstructive Disease--meaning that his pulmonary veins were small to begin with and continued to narrow from his chronic pulmonary hypertension. So, RARE meets RARE.
Having both major cardiac disease processes is truly RARE. Dr. O'Brien has had 3 kids out of 3500 (in 11 years at CMH) with PVOD and 1 of which also had TAPVR. And, Dr. Shah has had 1 other patient in his career with PVOD. The diagnosis of PVOD is not-compatible with life for any length of time. The disease progresses until the pulmonary veins are so narrow that they can no longer bring the blood back to the heart. Think McDonald's straw getting down to the size of a coffee stirrer. The lungs fill up with fluid with no place to go except back to the right side of the heart--and then back to the body.
So, our four months were an AMAZING MIRACLE.....and his name was William Howard Cunningham. All parents think that their child is a miracle from God, and they are all miracles. But, my baby boy might just take the cake (even if he didn't ever get to eat the cake!)
It has been said over and over again that "Burying your child is not the natural order." And, no it isn't. But, sometimes it happens. I wouldn't trade a minute with my boy knowing now what I know. He was a joy and what a beauty that we were able to bond with him. But, he is ALL better in HEAVEN. And, that alone, makes this mommy smile!!
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