My son Levi was born on Friday June 20, 2014 by planned section. My ex husband has a daughter who was born with TCHD so we knew that there was some chance of our child having it but he had two non HD sons after her so we figured the chance was small. Well I knew pretty much immediately that something was wrong with our lil guy. He looked swelled by his first evening and he completely refused to nurse. By the next morning (Saturday) he was throwing up stomach bile. The nurses kept insisting that he was fine. By that evening still had no poop and the vomiting was getting worse! I begged the nurse that night to check him out and to send him to our state children's hospital. She agreed to check him out well and took him to the nursery. About an hour later she came in and told us that he couldn't leave the nursery but we were welcome to come in. She said she had tried to put a tube down his nose and it wouldn't go down and she thought he had an upper blockage. We told her "no it's HD" she told us (after googling HD) that it couldn't be that because it was so rare and not genetic so the odds of my husband having two children with it would be astronomical! Turns out she couldn't get it down because of a deviated septum! It saved his life! The next morning (Sunday 2days old) he was airlifted two hours away to our children's hospital. He stopped breathing on the way from the pressure in his gut but they got him going again! I made them release me and followed. For two days they ran test after test. They did a barium test and they told us that he didn't have HD only a small intestinal blockage. So he went in for surgery the next day at four days old! It took six hours! Afterwards they came out and told us that he did have HD and his whole colon was affected plus around half of his small. They had placed an ileostomy. After that Levi didn't wanna eat so our total stay was a lil over six weeks! He came home with an ng feeding tube. We trucked along fairly well for a year. Then he started passing mucus from his bottom fairly regularly. During these times he got very sick! After months of me explaining the symptoms they finally realized that the colon that had been left inside was causing entercolitis! So we did irrigations at the first signs of trouble and moved along until he was two. At this point my son only weighed 18 pounds and they started to worry about brain development being stunted if he didn't start getting more calories. July of this year I agreed to surgery for a gtube and to remove the colon! He had his surgery July 31st and he didn't recover well. We spent over a week in the hospital. But he started improving. Gained over three pounds quickly with night tube feeds. His incision kept swelling up and busting open tho over and over. A couple weeks ago he started screaming in the middle of the night! I couldn't console him. Took him to the local er and he was transferred to children's hospital. He was admitted to the PICU and tests were ran. He was in so much pain and was running high fever! This was a Friday night. Sunday one surgeon told us he was being moved to a reg room and that she thought he was fine! Thank the good lord for a stubborn nurse! She called in a chief surgeon he took one look at my baby boy and rushed him to surgery! When they opened him puss poured from his lil belly! The surgeon who removed the colon had left a piece inside. It built up bacteria and exploded inside him! They had to remove another part of his good intestine and even move his stoma to the other side. Levi came out of surgery on a ventilator and on high doses of meds to sedate him. He also got high doses of antibiotics! They blowed every vein in my poor baby's arms and legs and finally put in a picc line! He slowly improved. He did without food or drink for seven days! He wasn't even on tpn! He lost all the weight he gained! We finally got to come home after 10 days and tomorrow will be a week that we have been HOME! He's doing pretty good so far! Although I'm having a heck of a time keeping bags on him due to the incision (he got a big cut this time)! Thank you all for taking time to read our story! Before the gtube and removing the colon I had already decided that I would not be trying to do a reversal. They tried with my stepdaughter and had to go back to ileo. I'm not going to put my son thru all that when they can't guarantee a good outcome! I did have them leave enuff colon right at the rectum tho so that if my son one day decides to try he can! If anyone has questions that I can help with feel free to message me! Good luck with all your HD babies!
I am a mum of three precious children, one suffering from Hirschprung Disease...wanting to connect, share, support and make a difference.