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Elyse (above, right) was born in the summer of 2006. Labor was induced due to high blood pressure and family history of pre-eclampsia. Elyse was perfect when she was born and seemed to be doing well, yet the next morning during her checkup, the hospital pediatrician noticed a slight heart murmur. Before being discharged, he performed an echo-cardiogram and sent us home, telling us not to worry and instructed us to return in a couple of weeks.
However, at three days old she began to show symptoms of heart failure; We had no idea this was happening. Thankfully, we had decided to take her to a different pediatrician and that’s when everything went downhill.
Our new pediatrician wasn’t comfortable with this “slight murmur” that the first pediatrician had heard. She immediately got on the phone and sent us to see a pediatric cardiologist. Hours later, she was diagnosed with coarctation of the aorta and other heart defects that required two major heart surgeries when she was a week and half old and then at three months old.
Due to internal bleeding and other complications, Elyse was diagnosed with PHACE Syndrome at about six weeks old. We learned that she had many internal hemangiomas and that she would be at risk of stroke due to brain blood vessel anomalies.
Our first year was extremely rough; Lots of other symptoms began to appear. She was in and out of the hospital frequently. We had to switch her hemangioma treatment twice because their growth was not slowing or stopping. Elyse had hemangiomas near her airway, GI tract, spine and eyes. These hemangiomas were all life threatening due to their location. Thankfully, we had a wonderful team of doctors in Chicago, who reached out to other specialists for advice. Once Elyse was on the right treatment, her condition stabilized and was able to come home, with home nursing.
Once home, she was able to thrive with the help of our early intervention team. Elyse was a year old before she was able to sit, crawl or stand. She was developmentally behind due to being at the hospital for so long. She was also 100% tube fed. Her team worked her little butt off and she started walking at two years old. Her feeding tube also came out at three years old, right before she started preschool.
Elyse is now a very happy 11 year old that loves her theater classes and enjoys watching musicals. She still sees several specialists throughout the year, but we have no major concerns. Nothing compared to that first year.
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