Finding Hope for Hirschsprung’s, Far From Home

After a decade of struggling with infertility, Sulaiman and Aaesha were thrilled to welcome their baby boy, Dawood, in September 2024. 

The couple had traveled to Chicago from the United Arab Emirates. After attempting multiple rounds of in vitro fertilization (IVF) at their home hospital, they sought care from fertility physicians at Northwestern Medicine Prentice Women’s Hospital. On the second round, they were successful. The family remained in the city until Dawood’s birth, so the team could monitor the high‑risk pregnancy. 

After Dawood’s arrival, the family was resting happily at the hospital. But by the evening, it was evident something was wrong. The baby refused to eat and began vomiting. Staff at Northwestern Medicine referred the family next door to Ann & Robert H. Lurie Children’s Hospital of Chicago. 

A New Journey

At Lurie Children’s, a biopsy in the NICU revealed that Dawood had Hirschsprung’s disease. Hirschsprung’s disease is a rare condition present at birth in which part of a baby’s intestine lacks essential nerve cells. Because that section can’t squeeze and relax properly, waste gets stuck instead of moving along. This can lead to symptoms like a swollen belly, vomiting, constipation, or a blockage in the intestines. 

Because Aaesha had previously been diagnosed with the same condition, the couple was already familiar with its symptoms. But that familiarity didn’t make the diagnosis any less worrying.  

“After 10 years of waiting for a child, we started another journey,” Sulaiman said. 

Finding Support Through a Dedicated Care Team 

The family received support from the Lurie Children’s International Patient Services (IPS) team to find resources to stay in Chicago and seek further care. The IPS team works with international families from around the world who are seeking specialized healthcare services.

“They stood with us through the whole journey,” Sulaiman said. “Anything we needed, they supported us.” 

The family was next referred to pediatric surgeon Dr. Erin Rowell for her expertise in the treatment of congenital diseases in newborns, including Hirschsprung’s disease. Dr. Rowell is also a leader in the field of fertility, and Aaesha and Sulaiman felt support and understanding from her experience. 

“That is when everything changed,” Sulaiman said. “Dr. Rowell offered big relief about this disease, especially after hearing we had suffered for years trying for IVF. She treats patients like her own children, as part of a family.” 

Building Strength Between Two Surgeries 

Dr. Rowell explained that an initial surgery was necessary to assess the extent of the disease. In some patients, only a small portion of the colon is affected, allowing surgeons to remove it and resolve the issue in a single procedure. In Dawood’s case, however, surgeons discovered during the December 2024 procedure that the disease involved the entire colon. 

Because of this, Dawood underwent an ostomy to create a stoma, a small opening in the abdomen that allows waste to leave the body and collect in an ostomy pouch. Over time, the stoma would allow the intestine to reduce in swelling and give the baby a chance to gain weight and strength before his final surgery. 

Though the couple was at first hesitant to use the ostomy pouch, the team at Lurie Children’s supported them in learning how to perform pouch changes as well as irrigations to empty the colon.  

They spent the following months allowing Dawood to get stronger, going to follow-up appointments and exploring Chicago. “During the stoma time he was very happy,” Sulaiman said. “He liked to go outside to the lakeshore here, to see people walking.”  

In July 2025, Dawood received the final pull-through procedure. The surgery involves removing the part of the colon that wasn’t working properly and pulling it through the bowel to reconnect the healthy tissues. 

“Managing Hirschsprung’s disease is challenging for any parent, especially when they are far from home and the support of family,” Dr. Rowell said. “We appreciate the ability to partner with the family through the needed surgery, so that the child can eat, absorb nutrients and grow normally.  While the journey is difficult, we know they can come out of this with a child free of Hirschsprung-related symptoms.” 

Returning Home, Pain-Free 

After an additional five months of follow-ups, weight gain and healing, the family was able to bring baby Dawood home to the United Arab Emirates in January. He is now eating normally and is able to live without daily abdominal pain.

“His energy is back, and he is very happy, better than before,” Sulaiman said. 

When asked what advice he would give to other parents of children with Hirschsprung’s disease, Sulaiman focused on one word — “hope.” 

“Just keep hope,” he said. “This disease needs hope, and it needs patience. Hirschsprung’s disease has a treatment and doctors can fix it, but it’s not a quick fix. Trust the surgeons. We felt confidence in them and were happy with the entire journey.”

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