I was pregnant with my second child and my physician told us that there was a problem with his heart. We went to Meriter two days later and it was confirmed that our baby not only had a hypo plastic left ventricle, but he has a double outlet right ventricle, TGA and pulmonary stenosis. In addition, his stomach was on the wrong side. While still in shock, we underwent the genetic and chromosome testing. All of this came back negative and we were told that his heart defect was a bad role of the dice. We were told that he would need at least two open heart surgeries, possibly three or we could terminate the pregnancy. That was not an option and we opted for the heart surgeries.
James Allan was born at Froedert Hospital on September 27, 2006. He was immediately taken down to the NICU and a heart echo was conducted. There was just enough stenosis to keep his oxygen levels in the upper 80s. We were so excited that we could take him home when I was released. However, things changed quickly when they conducted an upper GI and found that his intestines were blocked. James ended up having malrotation surgery at one day old. In addition, the doctors discovered James was born without a spleen so he will need to be on antibiotics for life.
James ended up spending 16 days in the NICU where 10 of those days were just figuring out how to eat. We spent three weeks at home and at James’ cardiology appointment, his oxygen levels went into the 50s. It was decided that he should be admitted that day and go in for heart surgery the following morning. James had his first open heart surgery on November 10, 2006. He spent 11 days in the PICU and three days on the 4th floor. We elected to have his second open heart surgery on June 1, 2007 for the Glenn Shunt procedure. James did very well and was home in six days. His third surgery, the Fontan, was performed on September 23, 2009 just shy of turning three. He was home in six days. James is now 4 ½ years old and doing great.
We keep hoping that more research will be done for children and adults living with congenital heart defects. Better medicine, less invasive procedures or even developing a mechanical chamber for those children like my son who is living without his left ventricle. James has changed our lives forever in a good way and I am so glad we made the decision to give him a chance at life. He has already taught us to be more patient with each other, live life to the fullest and to always have hope. James always has a smile on his face and loves to play with other children. He is very active and hopes to someday play baseball and learn how to water ski.
Written by Dana F., mother to James
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