Luke Miller

Luke's Story

Luke was born November 30, 1995. He at first appeared to be a very healthy boy, weighing in at 8 lbs 8 oz. and eating heartily after delivery. However, by the end of his first day, he had refused to eat any more, was spitting up a lot, seemed to be very uncomfortable, and had not passed his meconium plug. When he was two days old our doctor decided to have an x-ray done due to the fact that Luke's tummy was very distended and harder than any other infant's he had encountered. The x-ray showed a very large blockage in his colon.
Luke was born in a small town hospital that did not have the facilities necessary to deal with this, so he was flown to the hospital. I'll never forget the fear I felt when our doctor came back from viewing the x-ray and told me "you have a very sick boy." They wanted to fly him by helicopter since it could come directly to the hospital but were concerned that his colon would rupture in the unpressurized helicopter. He was flown by the jet while his father and I drove the 2 hours drive. When we arrived, they had already diagnosed Hirschsprung's Disease and had him prepped for surgery. The surgeon said he would be getting a colostomy and I had never heard of that before and had no idea what he was talking about. After giving a brief description of the colostomy, the doctor said that he would have that for a few months and would then have another surgery to repair his colon. The doctor said that he should have a perfectly normal life after that with relatively few problems. Luke had his colostomy and spent a few days in the NICU. I was very nervous with the colostomy bag at first, but grew quite used to it and he flourished.
We took him to the Children's Hospital for his pullthrough surgery at 5 months of age. The surgeon performed a Swenson pullthough. The first couple of days after the surgery I was sure we had ruined him. What had been an extremely content and happy baby was all of a sudden fussy and did not sleep well. The first time he was allowed to eat his tummy swelled up and he cried and threw up off and on. They determined that his bowels were still sluggish after the surgery and took him off food for another day or two. The next time he was allowed to eat he was a changed baby, much happier and content. We took him home a week after the surgery and he continued to do well.
We had a few scares with him not passing a bm in a 24 hour time, but that only happened a few times. Luke fought bumpy, bloody diaper rashes for 6 months or so, and bouts of terrible diarrhea, but that was the worst of it. Luke is one of the VERY LUCKY babies with HD that has had no serious problems since his pullthrough. He is almost 3 now, extremely healthy, and is bowel trained for the most part. We are still working on urine training because he can be a very stubborn little guy at times! I like to share Luke's story because HD is such a scary thing, and although there are many children who have such a rough time and seem to find no answers at times, there are success stories too. I hope Luke will be an inspiration to parents of new babies diagnosed with HD. For every child who has related problems and trouble even after pullthrough, there are children like Luke who go on to lead completely normal lives.