Lily, born 2000After suffering two miscarriages, I was finally pregnant with twins at the end of 1999, with a due date of July 2000. It was a somewhat difficult pregnancy, with gestational diabetes, pre-preeclampsia and early contractions. I had ultrasounds regularly and they never detected anything wrong with Lily, although she was always smaller than her twin. Two days after their birth at 35.5 weeks, a routine exam in the NICU uncovered a heart murmur. A fetal echo confirmed that Lily was born with TOF. My world turned upside down and I was so frightened.
After interviewing three surgeons, we chose Dr. Q at Columbia since he had done so many surgeries and was so well-respected in his field. Lily was only 4 pounds at birth and he said she'd need to be 10 pounds to undergo surgery. We finally scheduled surgery when she was 6 months old. Dr. Q said her heart was the size of a walnut. The surgery only took a few hours, but handing my baby over to the anesthesiologist for open heart surgery was the scariest moment of my life. Lily came through surgery well, but developed fluid in her lungs which required her to be sedated and a breathing tube for four or five days after surgery, which was heartbreaking. Finally her lungs had cleared enough that she was able to breathe on her own and wake up.
Holding her for the first time after surgery was the best feeling in the world. Seeing her drink the milk I had been pumping for her for 5 days was even better. But the best was when I was able to change her out of her hospital gown and into her own onesie. And then a week later, when I saw her smile again for the first time and finally knew she would be OK.
She was on medication for a few months after the surgery, but is now a beautiful, healthy 13-year-old who is an amazing artist and singer. She will need her pulmonary valve replaced before she's out of her teens, but there is now a new minimally invasive procedure to accomplish this that does not require open heart surgery. For those just going through this with your babies, it is hard, but it is do-able. And there have been amazing medical advances to take care of the sickest babies and ensure they live long, healthy lives.
Story by Lily’s mom, Tracey – New York
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John, born 2013