Dominic, born 2012Despite finding out early in my pregnancy that I had gestational diabetes, I had a wonderful, healthy pregnancy. I kept my sugars so well under control that I even lost a healthy amount of weight at the beginning of my pregnancy. It wasn't until my last stress test the Tuesday before I had Dominic that my blood pressure was a little high so my doctor sent me for blood and urine tests. That night I had a severe pain in my upper right abdomen. I called my doctor and he said the blood work was normal but I still had to turn in my urine sample. By Thursday morning, Thanksgiving, I was in even more pain and called my doctor again, this time he checked my urine results and they showed that I had mild preeclampsia and to stay off my feet and rest. By Thursday night after not being able to even eat because I was in so much pain my husband took me to the ER. I was admitted and they ran more blood tests which showed the preeclampsia getting worse so they induced me. Every four hours over the course of the night they drew blood. At 7:30 in the morning, my doctor came into my room and informed us that my preeclampsia had turned into what was called the HELLP Syndrome and that they could not wait for me to go into labor.
Dominic was born via emergency C-section by 7:58am. I remember hearing him cry for the first time, it brought tears of joy to my eyes! The pediatrician that did Dom’s first evaluation said she heard a heart murmur and said “most babies are actually born with murmurs”. The next day another pediatrician decided to order an ultrasound of Dominic’s heart because she was concerned about the sound and loudness of the murmur. She was careful not to make us worry.
I was being examined by the nurses when I could hear the technician call my husband out into the hallway. I could tell by the look on my husband’s face when he came back into the room that something was wrong. He tried to hold it together as to not worry me but I knew better. He sat on the edge of my bed as we watched the technician try to show the ultrasound results over the phone to a Pediatric Cardiologist in Syracuse. When more and more people started to come into the room I became increasingly nervous. It was that moment when someone in the room said, “Doc, are the parents are in the room?” that my world was turned upside down and I knew something was wrong for sure.
Instead of the cardiologist hanging up and calling the pediatrician he immediately asked that the tech to pass the phone to us so that he could speak with us. He basically said he needed to see Dom right away and he had already sent his team from Syracuse to Watertown to get him. Before I knew it, my husband was on his way to Syracuse to be there with Dom. We both agreed that’s where he was needed more. I had other family to comfort me, Dom needed his father.
When the nurses and team from the Crouse NICU arrived in Watertown they came to my room to explain what they were doing with Dom. They brought him in for me to see before they left. They already had so many wires and tubes hooked up to him and I couldn’t even hold him one last time before he left. The next couple of hours were torture waiting for news from my husband. Later that night my husband came back to the hospital in Watertown to explain to me what the doctors had told him.
Dominic has what is called Aortic Valve Stenosis. At just 3 days old, Dom underwent a balloon dilation valvuloplasty which was performed at the time of cardiac catheterization. Although this procedure saved his life, this treatment for Dom will not return the valve to a normal condition; therefore, Dominic will be followed carefully by his pediatric cardiologists for the rest of his life.
We got to bring Dominic home after 10 days of being in the NICU. I do not know what the future holds for my son, I do not know how limited his activities will be, the doctors cannot even tell me if or when he will ever need another procedure or surgery. As much as his smile melts my heart and his laughter brightens my day, I still worry about him but I know I need to stay positive. All I can do is pray to God and trust him that my son will grow up to be a healthy young man despite the valve Stenosis. Today he is a very happy and active baby. You would never know that he was born with a CHD.
Story by Dominic’s mother, Erin – New York
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