My brother, Cormac Massey, is 8 years old and has Down Syndrome and Hirschsprung’s disease. He was born full term with no complications until about a week after he came home from the hospital. He just would not wake up to feed, he would spit up almost all of the breast milk, and he would not poop. It became quite scary, quite fast.

At his first well checkup, the doctor tried to tell us that the spitting up was normal for some kids and that maybe the milk was such a pure match for him, he didn’t need to poo as much as other babies who were bottle fed. This wasn’t my parent's first experience with a baby, so this was not sounding correct to them. He would gag and choke if he was laid down flat to sleep, so many nights were spent propping him upright against mom’s chest as she learned how to sleep sitting up. His weight was dropping rapidly, and soon you could see his ribs. Months went by and we returned again and again after doctor visits with the blame put on my parents, and that they needed to be more aggressive with suppositories and prune juice.

It just seemed as though there was a blockage, so we decided to give him cereal at 4 months of age to see if indeed this would cause enough of a blockage that the doctor would take action. Sure enough, there was a visible bulge sticking out of his left abdomen that felt hard. At the same time, mom had gotten on websites that listed abdominal abnormalities related to Down Syndrome. That is where she found Hirschsprung’s disease. She went to the doctor at 4-month check up and asked if Cormac had this disease. She was told no and that it is extremely rare. We were also advised to stop reading things on websites.  No tests were ordered by the doctor just to rule it out. Mom was really beginning to think that this was what he had. 

After Cormac had the cereal, the bulge was getting larger and he was getting thinner and more lethargic. Many sleepless nights followed with lots of anguish and crying. Going on five months now, mom finally took him in and requested that the doctor give him enemas to empty his blockage. The doctor tried to send us home to do it ourselves, we asked to admit him to the Pediatric Ward. We mentioned Hirschsprung’s disease again, and she finally ordered an x-ray and enemas.  The doctor misread the x-ray and called to tell us he did not have this disease. Distraught and heartbroken, we didn’t know what else to do. It was back to the beginning. Until five days later, a random surgeon from the hospital called to tell us that they happened to see the x-ray and indeed he did have Hirschsprung’s disease. We were elated with a solution, but now it was off to Seattle Children’s Hospital for emergency surgery to remove Cormac’s colon. On the day after Easter, Cormac had surgery and it went well. He was able to nurse right after he woke, and he stopped vomiting up the milk for the most part. But we still had a long journey ahead of us, and still do today.

We all have tiny little fingerlike cells in our rectum that carries the feces down and through the anus which results in defecation. Cormac was never born with those cells and so his rectum never worked. Feces backs up and begins to clog the system, just like something stuck in your plumbing in the sink. So when he tried to eat, food would back up and have to be vomited. This leads to slow growth, sepsis, and eventually death if not treated. With removing his rectum and sewing the colon to his anus, feces can now flow out of the body. The problem now, is that it doesn’t stop. The rectum acts like a balloon and expands to allow people to feel the feeling of having to use the toilet, and then hold it in until they can. He does not have that luxury and constantly leaks. He is 8 and still has to wear diapers.

But good new is around the corner! In March we are taking him to Colorado Children’s Hospital International Center for Colorectal Care. He will enroll in a week-long bowel management program which will train Cormac and family to empty his bowels once a day and allow him to go to school like a big kid and not have to wear a diaper anymore! We find it hard to believe, but the Colorectal team assures us that this will be life changing and we can’t wait! He will most likely need a daily enema for the rest of his life, but to be clean every day and know what it feels like to be dry, is something we can’t even imagine for him yet. As you can picture, it’s a battle each time we need to clean him and change his diaper throughout the day. Not to mention the teasing and questioning by his peers at school.

This procedure in Colorado with be a pricey one. But the national expert, Dr. Alberto Pena, will be there every step of the way.  

Your donation would help us pay for 2 weeks of accommodations, car rental, food, and a down payment forhis bowel management program. We have spent about 140 dollars a month for eight years just for diapers! Insurance has refused to pay for them . After this program there will be no More  diapers! 

Your donation would mean so much to our whole family, but most of all, Cormac. He wouldn’t have to live life constantly worrying about his peers seeing his diaper or smelling him. We will be ecstatic and grateful no matter the amount we receive. Anything helps us along our journey to Colorado. Thank you so much for letting us share his story! -Niamh