Nicholas' Story   — Patrick Gray, OH, USA

I thought I would share our story. My wife Robin gave birth to quads on 4-19-07. She was not due until 6-28-07. The reason they decided to take the babies is because our little Ethan was not growiing. He is an identical twin with Zach and from the onset of the pregnancy they thought they had TTTS (Twin to Twin Transfusion Syndrome.) All of the babies delivered healthy except with the normal premie issues especially with Ethan. He was 1 lb., 14oz. His big brother Nicholas was the biggest at 3 lb., 6oz and was in perfect health and doing good. He was going to be a big one when he grew up--big feet, hands and long arms and legs. On May 1st he started having problems with his heart rate. It kept going up to the mid 220's and then dropping below 85. He started posturing and having seizures. The doctors could not control this so they had to give him a medication that would paralyze him so he could rest and be comfortable. To this point we had no idea what was wrong. During one visit to the NICU the doctors told us they were going to do a spinal tap and check for meningitis but most lilkely he did not have it. He started to get worse one night so my wife and I went to the hospital and the doctor was talking to use and said, "You know he has meningitis, don't you?" My wife and I looked at each other and could not believe what he just told us. To that point that was the first time we had heard anything about GBS or meningitis and how devastating it was. Our reply to the doctor was, "No, when did this happen?" They ended up transfering Nicholas to the local Children's Hospital for testing. After a few days and consults with Infectious Disease, Neurologists and a few others it was presented to us that Nicholas had suffered severe brain damage on both sides along with fluid build up and severe bleeding. We were told that if he was to survive that the best case for him was that he would be in a wheelchair and on a ventilator and maybe adapt to his surroundings. The worst case was that he would be in a vegetative state. My wife and I talked and came to the same conclusion that we wanted to put the end to Nicholas's suffering. We took him off of the ventilator on May 11 at 4:13pm and he ended up passing away on May 12 at 2:36am. This has been the worst thing we have ever gone through and wouldn't wish this on anyone. We are talking about starting up a foundation in his name to help get the word out on this terrible disease. God Bless to all of you who have had to go through this.