Mateo was born on October 20, 2008. My pregnancy was uneventful and everything was "normal". At birth, he weighed in at 8lbs 3oz, great size and seemingly healthy. But shortly we noticed that something was amiss. Mateo was refusing to eat. After hours of not eating, nurses tried giving him some sugar water, and he would vomit it back up. A few hours later, he was vomiting bile, and during this time had not had his first bowel movement (BM). This was alarming to me, but the nurses were telling me this could all be normal. We kept trying to feed Mateo to no avail, and the nurses tried to help him pass a BM with no results. The next morning, Mateo's tummy was really distended, so his paediatrician was called. The doctor ordered x-rays to be done, and that is where the problem was seen. His bowel was backed up with his stool, and he needed emergency surgery. We were told that Mateo was sick and that he needed surgery immediately or his bowel could burst. He was transported via neonatal ambulance to another nearby hospital. There is where we met paediatric surgeon, DR. George Wadie. He explained to us that for some reason, Mateo was unable to pass his stool, and his bowels are full and need to be emptied. The only way to do it at that point was surgically. Dr Wadie explained that they were going to go in and clean out the stool, and do exploratory surgery to figure out what was causing the problem.
Mateo came out of surgery with an ileostomy and a central line IV. Dr Wadie explained that Mateo was lacking nerve cells in his intestine-which meant that his bowel could not relax to let stool pass. This is why he has the ileostomy. We were told that his bowel needed time to heal before he would have any bowel movements, so we waited and waited in the NICU. That BM never came. Mateo ended up back in surgery to revise his ileostomy and for the Dr to get samples to biopsy. The biopsy came back positive for Hirschsprungs Disease (HD). At this time, neither me or my husband had a clue as to what HD was. It was a very scary time for us, to have our baby, just about a week old, to already have had 2 surgeries and to be in the NICU. On top of that, receiving news that he has a rare disease. And that it was a very severe case of this rare disease. Mateo was diagnosed with Total Colonic HD, his entire colon is affected as well as nearly half of his small intestine.
Mateo eventually had his BM, and was getting better and better by the day. When it came time for feeds, Mateo was drip fed through an NG tube for nearly a month and a half or so. It was decided because of the severity of HD, Mateo is considered to have short gut syndrome. This causes him to not be able to absorb the nutrients he needs before the food is excreted. So he needed surgery yet again to place a Gastrostomy tube in his stomach, so that he can be given small amounts of formula thorough the day and night.
The G-tube was successful and Mateo started to tolerate his feeding better and was gaining weight. It was a slow moving process to get him to where he could sustain himself with his feeds and to be weaned off of the TPN (iv fluids). Mateo spent his first Halloween, Thanksgiving, and Christmas in the NICU, 71 days to be exact. We were able to bring him home on New Years Eve 2008.
Since Mateo came home, he has had to live with complications due to HD. He was hospitalized about once every month-month and a half for gastroenteritis, dehydration, etc. Any occurrence of a stomach bug landed us in the ER. Here lately, it was a week stay in the paediatric unit every month. His surgeon didn't know why this was happening, so he ordered an upper GI to be done. This came back inconclusive. So we had to do a barium enema. This showed that Mateo's bowel was yet again distended. The distended portion was not allowing the bowel to contract properly, so is BM's weren't flowing freely. This would cause bacterial overgrowth, which in turn would cause diarrhoea. Mateo being short gut with an ileostomy, would lose a lot of fluids and would get dehydrated-therefore end up in the hospital. Dr Wadie did his research and found a possible fix. He decided to do the STEP Procedure. So, October of 2010, Mateo went in for another surgery. DR. Wadie went through the stoma to the dilated part of his bowel and cut it in a zig zag fashion, so it looks like an accordion. The cuts are then sutured and stapled so it remains so. This narrowed the dilated portion and added length to Mateo's bowel. We spent nearly 2 weeks in the paediatric ward and then Mateo came home. It is February 2011 and we haven't seen the inside of a hospital since! :
Today, Mateo is a little over 2 years old. He still has his ileostomy and G-tube. He is on drip feeds 5 nights a week while he sleeps. We add salt to his formula, and he takes prilosec for acid reflux. Other than this, Mateo is an average happy, active toddler. If his ostomy pouch and mic key button (feeding tube) are concealed, no one is aware that Mateo is any different from anyone else!
Mateo is on target on all of his developmental milestones, as well as he is in the 72nd percentile for his weight to height ratio. HD is something that we cannot cure, at least not yet, and that we have to live with on a daily basis, but it is NOT something we let get us down!
We do have a blog, where we post HD trials and triumphs.