Our story started on April 11, 2009, at the birth of our fourth child. We named him Matthew, because it means "Gift of God", and we truly considered him a gift
Our boy was taken right away to the NICU because he was grunting and having trouble breathing. They admitted and intubated him right away, and he stayed there for 3 weeks as they managed his breathing, then the distention of his tummy, giving him enemas and doing barium studies. He got a staph infection, then had to have a blood transfusion.
After those three weeks they transferred him to Children's Hospital in Los Angeles. As soon as we got there, we were told that they suspected he had Hirshsprung's disease. They did a biopsy and found no ganglion, and did a subsequent surgery. During the surgery, they found that his entire colon was affected. There were good ganglion in the small intestine, so they made an ileostomy and finally we were able to take our baby boy home.
Through the next year he did great. He grew, and developed perfectly. Honestly, if he did not have the stoma and bag, you wouldn't think anything was wrong. We dealt with leaky bags, a prolapsing stoma, but otherwise it was okay. Our surgeon did one more biopsy in December, and confirmed that the cells were not present and we would go through with a pull through when Matthew was one, and was eating solid foods.
On June 2, 2010, Matthew had his pull through surgery. Our surgeon is wonderful, and he made sure that everything went well. He did a straight pull through, removing the large intestine and attaching the small intestine to his bottom. After only 4 days in the hospital, we were able to bring Matthew home again.
He lost weight. Soiled his diaper about 20 times a day. The rash was horrible. But, slowly he got better. One month later, Matthew picked up a virus that dehydrated him so badly that we ended up back in the hospital for almost 2 weeks. After he came home, things were much better. He was now on a regimen of Lotomil and started feeling better, putting his weight back on, and we were able to manage the diaper rash.
Since that time, life has been good! We are 10 months out of surgery and our boy is healthy and happy and full of life. His rash comes and goes. We are very strict with his diet, give Immodium only as needed, and make him drink a lot of water or Pedialyte!
It amazes me that his colon is gone and he is doing so well. I know that this is something that will affect him his whole life. But we are hoping that as he grows up with this, it will be his own normal. We pray for a healthy life for our Matthew, no matter what challenges he may face.