Dear parent of a child born with a heart not fully developed,
I've begun this letter quite a few times. I think my major concern is to be able to convey our story in the best way possible to assuage the fears of people who are going through the same or similar circumstances, and to dote on Children's National Medical Center for making the experience as good as it possibly could be. I am searching for perfection, in an extremely imperfect story, but with a wonderful ending. How about if I just start and see where it takes me?
My son, Gary, was born in June 2001 via Caesarian section (C-section). He had been breech, and I was a gestational diabetic. There was no prior indication in the four sonograms that I had that there was an issue. Day one was normal, though the pediatrician stated that there was a small heart murmur, "nothing to be concerned about, but we will keep an eye on it." Day two brought an EKG, faxed to Children's National. They called within an hour and stated that they were coming to get Gary. If you are reading this letter for a similar reason, you know what it feels like to hear something like that.
Gary was evaluated in the Neonatal Intensive Care Unit (NICU) and it was reported to us that he was suffering from tricuspid atresia, (i.e he was born without a tricuspid valve). The news was staggering, literally. I was post-op three days from the C-section, and I remember my knees buckling. The doctors reassured me that there were surgeries to correct this type of thing, and that Gary would be ok. I trusted them, but in the back of my mind I was very worried.
Gary was only 2-days-old, so the doctors wanted to wait as long as they could to do the first in a series of three surgeries. His oxygen saturation levels fell below acceptable limits (60s) on my birthday, five weeks after Gary was born. We were at a doctor's visit, and Susan Cummings, MD,'s staff tried two different pulse oximetry readers, before coming to the conclusion that Gary should immediately be admitted for surgery.
Gary had surgery at 5 weeks. A B/T shunt was placed, which looked like a McDonald's straw to me. He was in the hospital for 12 days and everyone was absolutely wonderful. The staff takes great care to keep you updated during the surgery, and everyone is very patient and kind.
At 3-months-old, Gary had his first open heart surgery -- the first part of the bypass which was called the bi-directional Glenn. During the open heart surgery, Gary's lungs and heart were actually run with the help of a machine. The staff came out to tell us that he was on bypass and that he could be in such a state for 16 minutes. They then would come out and tell us that he was off of bypass. It was terrifying and comforting at the same time. The doctors came out (Drs. DiRusso and Jonas) to speak with us afterward and said that everything went better than well.
It was tough to see him hooked up to the machines, with swollen eyes from the anesthesia, and tape and tubes all over his body. Still, I was happy that he was alive, and in awe that this type of thing is possible! Gary was released after 10 days or so. He maintained about an 85 pulse ox reading for the next couple of years.
At 3 years and 11 months, it was time for Gary to have the third and final major surgery. It was strange because so much time had passed. It was almost harder this time, because Gary was older, and much more aware of his surroundings. Still, the staff at Children's did so much to ease his fears (and mine). The surgery went well again (do you see a pattern here?) and when Dr. Jonas appeared in the waiting room, I practically knocked him over with the biggest hug! It was done. Gary's pulse-ox rates were in the mid to high 90s, and have stayed there ever since. Just this week, he had his annual what a great word!) cardiology visit with Dr. Cummings, and his pulse-ox was a 97!
Gary plays basketball and baseball, and rides his skateboard. He is in honors reading and math and is always on the honor roll. His experience has made him, and us, much stronger people. I am forever grateful to Children's National for saving his life. If there is anything that I can say to you to help you during this extremely difficult time, it's that you can get through it. People would always say "I don't know how you do it"...well -- you just do. And doing it at a place like Children’s National is one of the best experiences ever, they know their stuff. And they know how to treat people. Don't be afraid -- there is always someone out here to talk to who has been through it. Do it. Read these letters. They help!
Francie, Gary's mom