Peyton's Story

My fiance, Jason, and I had a baby boy, Peyton. He was born October 19 2007. After our first sonogram, we knew there was an problem, but they didn't elaborate until the next one. We learned when I was about 2 months pregnant that Peyton had Congenital Heart Disease. We were at at Children's Mercy in Kansas City and immediately finding out that Peyton had heart problems, we saw Dr. Rajan quick. He diagnosed it to a T. Peyton's diagnosis was one that the doctors there had NEVER seen before. The defect was Heterotaxy Syndrome Right-Sidedness Asplenia Type.

Peyton was also born without a spleen. I had an emergency C-Section at Overland Park Regional. Peyton was taken to Children's Mercy not long after he was born. Once they got him there, he was doing well. Completely opposite reactions than what we were expecting. We thought we would be in the NICU for months. But not Peyton, we were out in 11 days. No surgery or anything. He was doing so well. And we found everything that was wrong had something to balance it out to make him okay. It's strange, I know, but it worked to his advantage.

So they planned for surgery in the summertime. We were at the Pediatrician once a week to make sure he was eating enough and gaining weight. He did awesome for his time at home. We saw his cardiologist, Dr. Raghaveer, every two weeks. And she said he was great. We had GREAT 4 months at home with Peyton. He was the happiest baby.

The beginning of March 08, we took him in for his scheduled Heart Cath to determine when he would have surgery. He did great during that. After, he was having a hard time coming out of anesthesia. He was hyperventilating, just didn't do well. He was moved to the PICU, back to the Cardiology floor and then back to the PICU, where they said, we wouldn't be taking him home til after surgery. I believe he had surgery March 8th. It was a LONG 10 hours. The OR nurse came every 30 minutes, said everything was fine. When Dr. O'Brien was taking Peyton off the Heart Lung Machine, Peyton started fibrillating, so he was put on ECMO. It was the hardest thing ever to watch. He was suffering for so long. Everyone was so great there. They did what they could for Peyton. He was on Paralytics to keep him still, they weren't even helping, he was going to withdrawals when they were trying to get him off. He came off ECMO after a lot of thought. He had a episode where his stats dropped below normal, but he was okay.

11 days after being taken off ECMO, he got infections. His heart was still open at this time. He had infections in his blood stream. They started him on meds and it took a toll on his kidneys. They were letting go of some of his fluid, but too much at one time. On March 31 2008 around 7pm, Peyton took a turn for the worse and he died. He was 5 months 12 days old. They worked on him for over 3 hours. They were shocking his heart, defibrillating, meds, everything that they could. He kept coding. The on call Doc said if he codes one more time, he will die. It was the most horrible thing ever to watch. We made the decision to unhook everything from him. He may of been able to stay alive for a while, but would of been brain dead.

I wanted to let you know that we've been in the same type of thing as you guys. And the costs are so outrageous, I know. Peyton's bill in the 27 days we were there was 1.4 million. We had a fund, to help pay for that. I just want you to know that I'm thinking of you guys and little Cooper. I wish you all the luck!!

Kylee Stalkfleet