Saturday, August 19, 2006

William Poley's Heart Story

Our son William was born in August of 2002, our sixth child. William seemed entirely healthy and passed all of the standard newborn tests. He had no outward symptoms of any sort of birth defects at all.

However, I had had a hard pregnancy with him (having my appendix out at 32 weeks), and the perinataltologist who saw me read my health history and saw that I had a brother who had died suddenly at the age of 15 years old in 1962. After she talked to me about it in detail, she said she suspected that he might have died from a congenital heart defect, and I should have my other children checked out. She also mentioned that it was possible I had a heart defect, and to be checked also. I was not aware of this possibility, and set up appointments.

William got to see a pediatric cardiologist when he was four months old. They found a Sinus Venosus Atrial Septal Defect, and my husband and I were told William would need open heart surgery when he was two years old. This was devastating news to us-how could we have not known this while I was pregnant with him, or as soon as he was born? It was a very frightening time for us-the thought of such a small child having open heart surgery was overwhelming. We knew nothing about the world of pediatric cardiology. My only experience was with my brother's death, and there was very little said in my family growing up about him.

We visited hospitals, joined an online support group, and got all the information we could. We learned that many more children than we had ever known not only had open heart surgery, but some even as newborns. The amount of help available to us was great, and there were so many other families dealing with the same issues. Many of them much more serious than William's. I didn't understand why it is that if we have the technology to find heart defects either in-utero or at birth, that we don't find them more often to help more children.

When the time came, we traveled to Philadelphia for Willam's surgery. His heart surgery went very well, and we were grateful for the surgeon, nurses, and staff at the hospital. I was thankful for the opportunity William had to repair his heart, with such great medical care available. In staying at the Cardiac Intensive Care Unit for three days, I saw a lot of what parents go through, when a child has a congenital heart defect. Not only what we went through, but seeing parents with more serious issues was difficult, even seeing loss of a child.

Our story with William does not end here, because even though he had great success with his surgery, he had complications afterwards. We went home two days after his surgery, and he had a major stroke two days after that. We were flown back to Philadelphia, and we began the process of his recovery from his stroke. The support from the neurology department, nurses, therapists, and other doctors was amazing. It was a hard time, and sad in many ways, but we have a faith in God that He saw William and would walk us all through this time. The original prognosis for William's recovery was that he would recover about 60% of his right arm use, and his speech. However, a year after his stroke, his MRI showed nearly no permanent damage, and William has recovered 99% of all functions that were affected.

Even with the complications that came to our family, I am still deeply grateful for the care we have been given. William's defect did not need repair until he was two years old, but I still wish we would have known at his birth that he had a defect. I know there are a lot of tests available to newborns, and that not all are done nor are all necessary. We were fortunate that William's defect didn't affect him right away, so his surgery could be put off until he was two.

I feel for the families who do not find out about defects until it is too late, and could have planned to help their child. My family, growing up, lost a son to a defect they did not know about. During my brother's lifetime they could not have done anything for him, anyhow. Here, forty years later, we have the technology to help and we should use it to that end. William was given a chance for a longer life, and for that I am grateful.

Jennifer Poley

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