Luke
Our story begins in May of 1999. Our third child was a bit of a surprise, so we had an ultrasound to find out how far along the pregnancy was at that point. After waiting what seemed an eternity, the Doctor met with my husband and I with some disturbing news. There was a layer of fluid found under the first layer or our baby's skin which indicated a defect. Usually it meant Downs Syndrome of Turners syndrome. There was enough fluid for her to tell us she did not think the baby would survive past 16 weeks. We were sent to Iowa City to begin more extensive testing and a CVS was performed (taking part of the placenta) to do chromosome testing. It took a week to get results and I remember fearing going to the bathroom or waking up to a miscarriage. The results showed all chromosomes were normal and we would be expecting our third boy!
We continued to be monitored closely and were told so many possibilities. The worst was that our son had a hypoplasitc left heart, meaning the left side was not developing. At 23 weeks, we were blessed with Dr. Pyevich (our son's current pediatric cardiologist). She performed an echo on his heart while in the womb and told us the best news we had heard thus far. He had a co-arctation of the aorta and we would need to do a controlled birth at the University of Iowa Hospitals and Clinics. She assured us the problem was "fixable" and we could expect him to enjoy a full and productive life. We went home to "relax" through the rest of the pregnancy.
On January 6, 2000 we were blessed with our miracle child. We waited 7 days in ICU for him to have his first surgery performed. It was successful, but more complications were to follow. It was found that he also had a pulmonary stenosis (thickened valve) which required ballooning his pulmonary valve. Within his first six months, he had endured his initial surgery, ballooning of his pulmonary valve and ballooning his original co-arctation repair. We were finally at a point of just letting him grow and thrive, without medications!!
We have continued our journey under the close eye of Dr. Pyevich and the Iowa City doctors. Because of the ballooning of his pulmonary valve, it was "leaky". He received many echocardiograms to monitor the leakiness and ensure that it was not leaking into the right chamber of the heart. The leakiness caught up to us and started stretching the right chamber, which required our son to undergo open heart surgery in August of 2008. He had not endured open heart surgery up to this point, only open chest. The big difference is that the heart is not by-passed in open chest surgery. When I received a call from the surgery nurse that he was on by-pass, I literally felt sick. His pulmonary valve was replaced with a cow valve. This has led to him having increased energy and we have seen great improvements in his school work. I always carry the fear that he will need the valve replace again at puberty as it does not grow with him.
Throughout our experiences, we have been blessed with the BEST doctors, nurses and support from the University of Iowa Hospitals and Clinics. We feel so fortunate to be surrounded by these people that are miracle workers! Watching our son play baseball, laugh and enjoy life is the best gift we have received and we know it is all due to the great expertise of the pediatric teams at the University of Iowa!!
John and Leanne Anderson