“Nathan was born November 29th, 2013. He has a twin, Noah. Nathan was 4lbs 7oz and about 17 inches long. The doctors took him right away as they could tell Nathan was having problems. Nathan had suffered seizures and severe respiratory problems after birth and was unable to eat from a bottle. About a week or two after, the doctors at Magee thought it was best for Nathan to be transferred to Children’s Hospital of Pittsburgh. It was there that we learned that Nathan had been diagnosed with Cri-du-chat syndrome. It is a rare genetic disorder caused by missing a section of Chromosome 5. Still, to this day, we do not fully understand it. It had come with a lot of health problems for Nathan. He now has a trach, uses a vent, and also has a G-Tube.
They think they nicked something during one of his surgeries that caused him to end up with ascites, which is where his belly fills with fluid. We are thinking that has healed now, thank God. Nathan also has kidney problems and his development is delayed. Nathan spent his first seven months of life in Children’s. On June 6th, 2014, Nathan finally came home. Since then, Nathan has had no signs of a seizure, he received all kinds of therapy (OT, PT, Speech and vision)and he’s taking a bottle and even eating some baby food, but still gets some food through the G-Tube. He loves to scoot and play with his toys and even is almost trying to sit up on his own!
Some doctors say Nathan won’t be able to walk, but he’s already proven them wrong about a lot and he is a determined little handsome guy, so we have lots of faith that he will. Nathan loves to play so much anymore that he doesn’t like to sleep, but unfortunately that is a part of his syndrome as well. We really think he just wants to play all of the time! Nathan gets 16 hours of nursing so if mommy or daddy need to sneak a nap in with his brother, we don’t hesitate! Nathan’s nurses are wonderful, he really adores them! There is so much more I can say about him and his syndrome. I always tell people if they would like to know more about his syndrome, just google Cri-du-chat syndrome and you will learn a lot about it. Honestly, that is how I had to understand most of it.”
By Lisa, Nathan’s mother