Hannah has a serious case of neuronal intestinal dysplasia (NID). She began showing symptoms at seven months--bloating, pain, vomiting, failure to thrive. It was a three year journey with many tests at four major medical centers and three pediatric gastroenterologists before we were able to get a diagnosis. By that time, Hannah was four years old, only 31 inches tall, and 20 pounds. Because her colon was so enlarged, and Hirshsprung's disease had been ruled out, she underwent surgery to have an ileostomy. We knew that her colon was not functioning well. We hoped things would be normal after that, but they only got worse. Hannah's entire digestive tract stopped working for a week after the surgery forcing us to have her put on TPN with a central line. Three weeks later this line infiltrated and we had to pull it out. Fortunately, by this time, she was moving food through on her own; however, it became clear that Hannah's NID was not limited to her colon only, but also affected her stomach and small bowel.

 

For the next three months, Hannah was able to eat more than she ever had (mostly PediaSure) and was able to gain six pounds and grow three inches taller. We were very excited and hopeful that perhaps Hannah was outgrowing her condition. Unfortunately, the distention and vomiting episodes returned. Four months and three hospitalizations for dehydration later, Hannah had lost four pounds and was thinner than ever. We called on many people to pray during this time. We began to rotate a couple of different pro-kinetic agents (medicines that help motility in the gut). This worked for three months, but her body eventually built up a resistance to these drugs and the pain and vomiting returned. Then she caught a bad stomach virus, shutting her gut down completely. She was in severe pain and very distended. We had an NG tube put in so that we could suction her stomach of excess gas and food and also feed her with formula. This was followed by five different NG tubes over the next few months so we made the decision to have a G tube put directly in her stomach long term to help with feedings and decompression.

     The G-tube did not take care of the problem as we had hoped. A CT scan and a few x-rays later, we discovered a blockage in the distal area of her small bowel. This was surgically corrected on March 27, 2007. This has helped her quite a bit; however, her diet is still very strict and weight gain and growth in height is slow.

     We are once again calling on people to pray for Hannah--for a miracle, for wisdom and patience for her parents, and efficient and effective decisions and guidance on the part of her physicians.