Stories about real people who are living with Hirschsprung's Disease.
I am a 43-year-old male that was diagnosed with Hirschprung’s Disease at birth.
I’m the youngest of 4 siblings, with a twin sister who was born without the same digestive issues as me. My Hirschprung’s Disease diagnosis came quickly after birth because of the symptoms that I had at the time, and a colostomy was put in until I was strong enough for surgery.
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.
Joey was born at 38 weeks gestation at Blanchfield Army Community Hospital in Ft Campbell KY. Shortly after he was born I tried to feed him and he would eat and then throw up everything he ate and he would throw up green and yellow bile.
We alerted the nurses and then the pediatrician came into talk to us he said they were concerned because Joey was throwing up bile and he hadn’t stooled yet so they took him to the special care nursery at the hospital.
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.
Please watch and share this inspiring story about 10 year old Colt Stewart, his battle against Hirschsprung’s and his determination to not let HD stop him from becoming a ranked BMX racer!
Colt Stewart BMX Video
I am a 43 year old male that was diagnosed with Hirschprung’s Disease at birth.
In the fall of 2012, I flew out by myself to India, Thailand, and Istanbul for 2 months. I was not staying at high-end resorts, more of a backpacking and trekking trip.
Jack was born at Mass General on Tuesday, April 13, 2010 at 7:29 am weighing in at 9lbs 7oz and 22 inches long. He was a beautiful healthy baby boy or so we thought.
In the following 24 hours Jack had been very fussy while eating and did not want to eat very much. He then began to spit up green bile and he had not passed his meconium. The doctors started to get concerned and decided to take him to the NICU Wednesday afternoon.
REACH founder Isabelle Schnadig recounts her son’s Hirschsprung’s story. When Adrien was born, I knew intuitively, as a mother of three older children, that something was not right.
Although he looked healthy, he refused to nurse and was unable to have a spontaneous bowel movement. When I was pregnant, Adrien had been diagnosed with Down Syndrome .
Zachary is a four-year-old boy who was born with Hirschsprung’s disease, a serious illness that affects the large intestine.
Normally, muscles in the intestine push stool along so that it can be evacuated. Special nerve cells in the intestine stimulate the muscles to push. Children with Hirschsprung’s disease do not have these nerve cells in the last part of the large intestine, which leads to backing up of stool and severe intestinal obstruction.
Avery was born a seemingly healthy 8lb 12oz little baby boy, but within days, his health began to deteriorate. He wasn’t very interested in eating, his stomach sounded like a catfight and he was really straining to go to the bathroom.
He was losing weight day after day, yet his pediatrician didn’t seem too worried about his symptoms telling us, “His weight loss is concerning, but not alarming.” Well, for us, a weight loss of over a pound and ½ in 10 days of life was certainly alarming.
Alexis was born in May 1986. After coming home from the hospital at three days old, she seemed disinterested in nursing. Her formula intake was minimal and she continuously threw up.
After noticing that she had failed to have a bowel movement within the first week of being home, her doctors were notified. Following that, she began to pass stool of diarrheal consistency. We continued to bring her to the doctors urging them that there was a problem, however they disagreed.
Abbie was born on September 23, 2008, three weeks premature. She was delivered at St. Vincent’s Hospital in Worcester, Massachusetts via caesarean section because of her mother’s gestational diabetes and preeclampsia.
Within the first 24 hours of life, Abbie was transferred to UMASS Memorial NICU as a result of green liquid bile that she was throwing up upon nursing. Her abdomen also became increasingly distended as time progressed.
Ryan’s story begins with his father David’s battle with Hirschsprung’s disease, who wasn’t diagnosed until a couple months into his life.
Although healthy now, he battled a colostomy bag and incontinence throughout childhood. We knew there would be a chance that Ryan would be born with Hirschsprung’s disease, but believed it wouldn’t happen.
Our only prenatal wish was that our second child would be as healthy as our first born daughter Julia. Thus, we were elated when all indications were that he was healthy. Dylan was born on June 21st of 2011 weighing 7lbs 14 oz. He was beautiful and appeared healthy.
However, soon things began to change as he was not breastfeeding well and started vomiting on his first day of life. At that time, I was told he had abdominal distention. He was no longer allowed to eat, had an abdominal x-ray which showed distended bowel loops, and was transferred to another hospital for a higher level of NICU care.
