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Brennan was born on a Thursday in May 2012 at South County Hospital. His mother, my daughter Lisa, was induced at full term due to gestational diabetes. His first time parents were thrilled to finally hold this healthy baby boy in their arms. Two days later as Mike and Lisa were getting ready to bring him home the doctor came in for the pre-discharge check. Lisa, once again, asked about Brennan’s disinterest in nursing and spitting up with very little bowel movement. They were told that it was normal as long as he wasn’t spitting up green. As the doctor was leaving the room up came the green!
Instead of taking their bundle of joy home, Brennan was rushed to Hasbro Children’s Hospital in Providence, RI where he underwent many GI tests. After what seemed like forever, the doctor came in and said he thought that Brennan may have Hirschsprung’s Disease. Hirschsprung’s affects about 1 in 5000 people. Hirschsprung’s could be confirmed by a biopsy of the colon but we had to wait (and stay in the hospital) until after the holiday weekend. The biopsy confirmed that Brennan’s colon was lacking nerve cells (ganglia). They would have to remove part of his colon with what is called “Pull Through” surgery. Further biopsies would be taken in the operating room to determine how much of his colon was effected and how much would have to be removed. Luckily only a small amount of his colon would need to be removed and the prognosis was a happy healthy child. A week after the surgery he was able to finally go home.
Mike and Lisa learned how to do dilations at home to keep scar tissue from forming and closing the colon at the surgery site. His frequent checkups showed wonderful progress with no issues.
At about one year something changed. Brennan started throwing up, he couldn’t eat and became dehydrated and was hospitalized. About a month later the same thing happened. He would get lethargic, dehydrated and throw up. Then admittance to the hospital became a weekly event with IV fluids, irrigations, enemas, medications and x-rays and occasionally antibiotics. His belly would become distended and rumble so loud I thought the neighbors would hear it. He would stop in the middle of playing and grimace and put his hand on his belly and stare off into space and grind his teeth. The medications had him pooping like pudding about 10 times a day and he would get horrific diaper rash. Then he would get backed up and irrigations and enemas had to be done at home. Nothing seemed to work for more than a week. Two to three days out of every week he was unable to eat either from being backed up and nausea or because they wouldn’t let him eat in the hospital while waiting for tests to be done. Between not being able to eat and his colon not working correctly, he is now malnourished. A gastrologist was consulted and more unsuccessful medications were prescribed. The bowl management specialists at Hasbro said Brennan was their most challenging case. The original surgeon at Mass General suggested another biopsy to rule out ganglion drop off. The procedure was done back at Hasbro. Good news. There were ganglion cells present. But now where do we go from here? Everything that should be working wasn’t. With weekly admittance to the hospital Lisa had to take unpaid medical leave from her job.
Brennan’s pediatrician arranged an appointment at Boston Children’s Hospital where they did blood work and more x-rays. An additional appointment was set up for Thanksgiving week to scope him from top and bottom, do an air pressure test, two more biopsies to test again for Hirschsprungs and for celiac with possible botox injections into his sphincter. He will be lightly sedated. The prep for this visit is another two days of no eating except for clear fluids, Senna and enemas. Hopefully these tests will provide some answers and a plan for recovery.
Brennan has become petrified of doctors, nurses and even x-ray and waiting rooms. This has been financially and emotionally overwhelming for Mike, Lisa and Brennan. We have no idea what lies ahead for Brennan or how much more he will have to endure. I’m sure they would really appreciate prayers, positive energy or any help you can offer. Thank you!
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