Benjamin's Story
Benjamin was diagnosed with Hirschsprung's when he was 20 months old...As many of you know, this disease is generally diagnosed within the first 48 hours of birth, but it took us almost two years. Benjamin and his twin brother Bentley were born 6.5 weeks early and both spent time in the NICU. Benjamin was in the NICU for an entire month, because he was not eating as much as the doctors would like. I tried pumping for him, giving him formula, even donor milk, to no avail. Finally the doctors concluded that Benjamin had “necrotizing.” He would be placed on special formula for a milk protein allergy and would be released to go home.
Benjamin’s first year was really difficult, especially because his twin brother did not have any of the same challenges, it just didn’t make sense. Benjamin almost never slept and when he did, he had to be propped at an incline. My husband or I would have to sleep on the floor in his room while he slept in a crib, on a boppy pillow or on a nap nanny.
Benjamin was so stiff we would refer to him as a 2x4 and he cried every time he went to the bathroom. I took him to specialist after specialist, but we did not make much progress. He saw a Pediatric GI several times for acid reflux, a Physical Therapist for his stiffness, and even an Occupational Therapist.
When Benjamin was 20 months old, and after almost two years of trying to figure out what was going on, I asked the GI Doctor to do a biopsy. He refused, and said that it would hurt my son unnecessarily. I was told Benjamin’s X-Rays were “fine” and that his existing treatment plan was sufficient. I called my Primary Care Physician, and she suggested I get a second opinion.
I just knew that there was something wrong that we had not yet identified – I had spent a full year with specialists and therapists, and I finally demanded the biopsy. We went in for the biopsy on August 24th, and were told the results would be available within two days. I got a call the very next morning and was told to bring Benjamin in for surgery immediately, as his biopsy results indicated a severe case of “Hirschsprung's,” a word I had never even heard before.
The next few days were a blur – I was told that Benjamin would have “pull through” surgery in 24 hours and that after a few months, he would have a “reversal surgery” and that “hopefully” he would be as “normal as possible” living with this disease.
So, I did what any mom would, and I started researching Hirschsprungs around the clock. I wanted to be as educated as possible, and in those 24 hours, I learned three important things:
1. Hirschsprungs is a life long illness
2. There is no cure
3. My son had special needs and our lives would never be the same
Benjamin’s pull through surgery went well and the doctor told me that he now had a “stoma” and a “colostomy bag,” and that we would learn how to care for both. Unfortunately, Benjamin did not make any improvements that day, and his stoma died. He had to go back in for a second emergency surgery to remove the dead intestine. A week went by, and we were released to go home.
We had in-home nurse care twice a week and we did our best to manage life with a colostomy bag, twin toddlers, and a tween (the boys’ older sister, Paige). The colostomy bag was a challenge: It would explode all the time, it was difficult for Benjamin to sleep comfortably, and we were constantly in the hospital with complications.
In October, Benjamin’s stoma protruded so far that the ER doctor decided we had no choice but to do the reversal surgery immediately, and that hopefully enough time had passed for his intestines to heal internally. After another week of recovery in the hospital, we were told Benjamin should now be able to have a “normal” life.
Life was not normal, not in the least. Benjamin was always sick and at one point went from one bowel movement every two weeks to literally 30 diaper changes in one day. We could barely leave the house, and after months of this with little support from his medical team, we decided to switch from Children’s Hospital to Rocky Mountain Hospital for Children, to work with Dr. Steve Rothenberg. Dr. Rothenberg was renowned for his Hirschsprung expertise, and we immediately felt supported, and for the first time, we even started to feel like we understood the disease. He helped us to create a plan: Perform two more biopsies and then try a Cecostomy button, which most doctors do not recommend until a child is older, but in our case, he thought we could handle it.
Fast forward to three years later: Benjamin still has his Cecostomy button, is potty trained, and we complete a daily Cecostomy flush to control his bowel movements. So, 90% of the time, he has no negative effects from his flushes or button, and 10% of time we have challenging days. Benjamin is in a lot of pain, gets sick from his blockage, and/or has to visit the ER.
Benjamin will have his Cecostomy replacement surgery in December of this year, and our long term plan is to keep the Cecostomy button and have annual surgery to replace the button hardware. Benjamin even had a whole week this year when he used the bathroom by himself every day without a Cecostomy flush! This one week gave me hope, something I have not had in years.
Benjamin is a Hirschsprungs Disease hero and he loves to show off his button and teach people why he is so “special.” At the young age of 5, Benjamin has overcome more obstacles and challenges than most adults, and he wants to be a doctor when he grows up so that he can help other people with his disease.
I am glad that I trusted my parental intuition, and that I did not give up until we found the right doctor.
I will continue to educate those around me about Hirschsprung's and advocate wholeheartedly for all three of my kiddos, and especially Benjamin - this is my life’s mission
Thank You,
Nicole