Hirschsprung’s disease won’t stop Myles from smiling

Baby Myles smiles on a hospital observation table, resting on his arms and smiling at the camera.
Myles’ smile is contagious, you would never guess that he spent the first few months of his life in and out of the hospital.

If you look at Myles today, you’ll see a beautiful 1-year-old full of smiles and giggles. He chatters like any other baby and has a lot of energy that keeps his parents busy. They would not know that the last 12 months have held a series of surprises for his parents – and a life-changing treat for him. Doctors at his birthing hospital initially expected him to be born with his intestinal organs on the outside of his body, a condition known as omphalocele. “We were prepared that he was going to be born with this condition and needed immediate surgery,” recalls Amanda, Myles’ mother. “But when it finally arrived it had everything where it was supposed to be, which was a huge relief.”

But that relief was soon replaced by a new worry – Myles didn’t poop for the first few days after he was born. After a few visits to the emergency room at his local hospital, Myles was diagnosed with Hirschsprung disease at just 4 days old. This condition occurs when a baby’s gut nerve cells fail to develop properly, delaying the progression of bowel movements (poop) through the intestines. This causes the intestines to become blocked, leaving children unable to eat and putting them at risk of a life-threatening intestinal infection called enterocolitis.

Trust goes a long way

When he was 4 weeks old, Myles and his family traveled from their home in Manchester, New Hampshire after a referral to see Dr. as dr When I met Nandivada Myles for the first time, it was obvious that something was seriously wrong. “We took Myles to see Dr. Nandivada, and that night he was admitted to the NICU (neonatal intensive care unit),” recalls Amanda. “She could tell right away that Myles needed surgery, having just met him that day.”

dr Nandivada knew Myles needed a colostomy, a procedure in which a section of the large intestine is brought to the surface of the abdomen and sewn up. A colostomy bag is then placed on the outside of the abdomen to collect stool.

dr  Nandivada holds Myles on her lap and holds his hand.
It only took the first meeting with Myles for Dr. Nandivada realized he needed a colostomy.

Myles had his colostomy bag for seven months before undergoing a pull-through procedure to remove the blocked section of bowel. To calm her nerves about the surgery, Dr. Nandivada Amanda and her husband through everything that would happen before Myles had surgery and even shared pictures of Myles’ surgery after surgery to show what happened during the surgery. “Those little touches of just being there for us and sharing those intimate details as parents were so thoughtful and appreciated,” says Amanda. “Dr. Nandivada’s confidence and experience really took a huge load off our shoulders.”

Better days ahead

After the successful passage, Myles had six inches of intestine removed to clear the blockage. And a month later, Dr. Nandivada delighted to see Myles healing to a level that she expected at the year-long follow-up.

When asked what advice she would give to families who may have a similar diagnosis and situation, Amanda emphasizes the importance of trusting your child’s care team and avoiding searching for symptoms on the internet. “You can really fall into a hole of misery if you’re constantly Googling possible diagnoses,” explains Amanda. “It’s best to trust your child’s medical team, turn to internet groups to connect with other families and share resources, and always keep your child’s best interests first.”

Now, after celebrating his first birthday in an apple orchard last month, Myles is ready to take on the world. He spends his time playing with his new keyboard, watching silly videos on his mother’s iPad, and visiting his grandparents for the night. “He smiles all the time – he’s perfect.”

To learn more, visit the Colorectal and Pelvic Malformations Center

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