Ethan's Story

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Ethan has been a fighter since before he was born. My pregnancy with Ethan had a very rare condition known as TRAP sequence. TRAP sequence is an identical twin pregnancy, however one baby is an "acardiac" twin and does not receive blood with oxygen so they cannot develop correctly. Ethan in this case was his brother's "pump" twin- he pumped his own blood through his twin's body, which put a strain on his little heart. Ethan's path with Winnie Palmer began with Dr. Desai, his Maternal Fetal Medicine doctor (MFM). Dr. Desai monitored Ethan and his twin every week to make sure Ethan was growing alright and that the strain on Ethan didn't become life threatening. Around 30 weeks, Ethan's growth began to slow and his delivery was scheduled at the 34 week mark. His delivery went well and he was sent up to the NICU.

At 3 days old, Ethan's belly became distended. His wonderful nurse, Amanda, was the one who realized something was wrong. Ethan was rushed to emergency surgery. Dan and I had no idea whether our baby boy was okay or what to expect. Thanks to his surgeon, Dr. Plumley, his surgery was a success. He had had a large hole in his colon, so he had to have a colostomy bag for the first six months of his life. After a couple of days, we learned how to care for him and he was on the road to recovery. He did have a hernia, which we knew would need surgery, but that seemed like a small bump on his way home.

A few weeks later, Ethan hit another snag. He had developed a heart murmer and his echo showed that he had 3 holes in his heart that would not be able to close on their own. On top of that, he began showing signs of heart failure, which kept him from being able to eat on his own, drained him of his energy, and meant he needed to add higher calorie formula to his milk to help him grow. It was heart breaking news to hear that my tiny little fighter would need open heart surgery. His heart surgeon was Dr. DeCampli, who also happened to have turned down being an astronaut in order to fix baby hearts, so at least we knew Ethan was under the care of the best heart surgeon. The surgery was a success and as heart wrenching as it was to watch him recover, I finally felt as if our little man was going to make it.

The next few months were pretty rough for him. He needed his hernia repaired, as well as have his colostomy reversed. He also had scar tissue in his colon close in, which sent him to the emergency room and the hospital for a week. He needed several other procedures he had to be put under for to check on his heart and keep his colon in check. But, by his first birthday, he was really becoming a normal, everyday kiddo. He is still small for his age, but his percentile increases with every checkup. At his last checkup, he made it up to the 25th percentile, which was amazing. He loves dinosaurs and legos and even being a little monster of a two year old sometimes lol. There's hardly a day that goes by that I don't think about Winnie Palmer and all of the amazing people in it. I don't know what we would have done without the kindness and expertise of his nurses and doctors. We got to bring our beautiful, strong Ethan home and we get to watch him grow, and there's not a gift more precious than that. 



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