My pregnancy and labor/delivery were textbook normal. Mia Elizabeth came screaming into the world at 7:56pm on a rainy September evening. Within seconds of my husband, Derrick, cutting the umbilical cord, our baby girl was whisked away from us. The nurses said she looked pale. We had no idea what was wrong for hours. Thank God for the nurses working that evening at Advocate Sherman Hospital in Elgin, IL for their quick thinking and intervention!
My daughter was taken away to the special care nursery where tests were ran. It was hours before I saw my husband again, and judging by the look on his face- I knew that he didn’t have good news. He said, “they put her on life support.” How could this be?! Those are not the words I anticipated hearing that day, or ever! 4 hours after Mia’s birth we were put on a Facetime call with a pediatric cardiologist. He told us more words I never expected to hear, “What your daughter has is not compatible with life. You don’t have options, there is a single option- your daughter requires open heart surgery soon to survive without it she will die.”
There were a lot of unexpected moments the first hours, days, and weeks of my little girl’s life. I didn’t get to hold her after she was born. I only got to see her for a few seconds before she was taken away. I spent the first night of her life an hour away from her. I walked out of the hospital 12 hours after her birth empty armed to go to another hospital where my little girl lay fighting for her life.
Mia was airlifted to Advocate’s Christ Children’s Hospital in Oak Lawn, IL in the wee hours of the morning. Mia was born with a severe and fatal heart defect called Transposition of the Greater Arteries. To keep it somewhat simple; the “great arteries” in little Mia’s heart formed wrong and connected to the heart opposite where they should be. In Mia’s heart, oxygen poor blood returned from the body to the heart and back out to the body- not getting the trip to the lungs. And the oxygen rich blood went to the lungs to the heart, and back to the lungs- never getting to make the trip to the body and the vital organs.
Mia had open-heart surgery at 5 days old. Because of generous people donating time and money to heart research, medical advances have been made and I am so happy to say my little Mia will be turning 10 this September!!! The mortality rate for this particular heart defect in the 1940s was 100%, in the mid-50s went to 50%, and today the survival rate is greater than 90%! Mia's heart will never be "normal" and she will always have regular cardiologist visits. While the surgery gave my girl chance at life- there are complications with the surgery. Mia's "greater arteries" were switched but not her valves- this could pose a problem in the future. And there are others. But we thank God and people that donate time and money to make the lives of these children better.
Congenital heart defects are the #1 birth defect and the leading cause of all infant deaths. Nearly 1 out of every 100 babies is born with a CHD. 1 in 3,330 babies are born with the particular heart defect that Mia has. Each year over 1,000,000 babies worldwide are born with a heart defect; 100,000 of them will not live to see their first birthday; thousands more die before they reach adulthood. Although survival rates have improved, there is a lot more room for improvement and the quality of life for these patients!
Congenital heart defect research is grossly underfunded. For every dollar the government spends on medical funding only a fraction of a penny goes to CHD research. Money for research and awareness is crucial to better the outcome for these heart babies!
The annual Chicago Congenital Heart walk will take place this year on June 8, 2024. This event has proven to be a great way to raise money for heart research.
As a parent of a child that has benefited from pediatric heart research and has successfully came through open-heart surgery, I can attest to what your donation would mean to our family and other CHD families!!!!
Thank you so much
Suzy Hamilton
