Jacob was born in Newton, Massachusetts in September of 2011 at 8 pounds, 13 ounces. He was full term and we thought we were going to have a healthy baby. He had difficulties with feeding and stooling post-birth.

When he was forty-eight hours old, it was decided that he needed to be transferred to Massachusetts General Hospital, in Boston, to have tests done. As parents of a newborn, it was extremely scary to watch our child taken away from us to be transported by ambulance. I had a C-section and was still a patient at the hospital where he was born, so I could not go with him.

Jacob was admitted to the NICU at MassGen, where he stayed until he was about two weeks old.

Many tests were performed and when he was about five days old it was confirmed – he had Hirschsprung’s Disease. The doctors and nurses took tremendous care of Jacob, as well as Jacob’s father and I. The team of doctors helped to educate and prepare us for the surgery that he would be having. During this time it was very confusing and overwhelming. There was so much information to absorb, as well as many emotions. One week had passed in our child’s life and I had only been able to change his diaper once. We had so much support from family, friends, doctors and nurses, but it was not easy.

After Jacob learned to feed and we learned how to do dilatations, we were able to bring him home for the first time!

The plan was to go home for a few weeks until he was a little bigger and then we would go back for his surgery. We were home for eight days when he was having trouble feeding again. His belly became distended, that’s when we brought him back to the hospital where he was admitted to be treated for enterocolitis. That’s when the doctors decided it would be best to have his surgery sooner than later. He had a ‘soave pull-through’ procedure when he was three and a half weeks old. Thankfully, it was a short segment and he did not have to have a colostomy bag. Post-surgery, we did struggle with diaper rash and problems with constipation and stooling. Two months after his surgery, he became very sick from enterocolitis once again. His belly became distended and he couldn’t keep any food down. We went to the ER and he was sent home that night, because the ER doctor decided that Jacob had a viral stomach bug. As parents we were confused, because we were told by his surgeons that these “stomach bug” symptoms could mean something very serious in a child with HD. We figured the doctors would know best, so we went home. In the middle of the night Jacob began to get worse. He was very lethargic, his fever was not going away, he had diarrhea and he continued to throw up. In the morning, we knew something was not right and this was not just a virus. With guidance from his pediatrician, we brought him to the emergency room at Children’s Hospital Boston where he was admitted for Hirschsprung’s related enterocolitis. My advice to parents is to educate yourself about this illness and be advocates for your child. Not all doctors and nurses know enough about HD and the associated risks. Go with your gut instinct about your child’s health. We know our children best.

Following the hospitalization, we began to perform irrigation enemas on Jacob, four times a day.

Any parent who has needed to do this, knows it is not a fun experience or anything you would want to do to your child. We kept reminding ourselves that Jacob was young and he would not remember it. We continued to perform irrigations for about two months until Jacob was four months old. Following this, he continued to show signs of struggling with stooling. At this time he had many other tests and procedures to make sure that his first surgery was successful. It was confirmed that everything went well and we were presented with the option of trying Botox injections for the next step of treatment. This is where Botox would be injected into his sphincter muscle so it would relax and allow him to stool easier. This was also important around this age, because he was transitioning to eating solid foods. We, along with his supportive GI doctor, decided to try the Botox. His first injection gave him success for a year. Botox can last as little as three months, so we were pleased with the results. We were able to stop dilatations and irrigations and Jacob began to pass stool on his own. About a year later we had a second Botox injection preformed. Since the second injection we had one hospitalization of enterocolitis, which was treated with Flagyl.  Jacob had a third injection in November of 2013. We continue to watch him daily and obsess over his poops. Did he poop? How many times during the day? What was the consistency? We watch him to make sure he is not struggling or developing any early signs of enterocolitis.

We know his doctors are only a phone call away. The emergency room is only a drive away. We know we are very lucky to live near Boston and some of the best hospitals in the world.

As parents, we continue to hope for the best for our child and hope that he will learn to control his bowel movements. We manage the constipation with a high fiber diet, prune juice and Miralax every day. The next step is to begin potty training and to continue to seehis GI doctor. Through all of this, our son is one happy kid. He is always smiling and is full of life. We do not let this get us down, we appreciate the life we have with our son and, know every day, we are so blessed!

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