Carter
Born on Thanksgiving Day, Carter Bell was the greatest holiday gift parents Sara and Scott Bell could receive. Just three days after birth, however, something didn’t seem right with their new little boy.
“He wasn’t nursing well,” said Sara. “His stomach kept getting bigger and bigger. We knew something was wrong.”
Carter hadn’t passed stool spontaneously and his pediatrician in Bakersfield transferred him to Children’s Hospital Central California. Pediatric surgeon Dr. Michael Allshouse evaluated Carter to determine the blockage in his intestines.
When Carter was 5 days old, Dr. Allshouse diagnosed him with Hirschsprung’s disease. Hirschsprung’s is a congenital disorder of the intestines caused by absence of certain nerve components known as “ganglion cells,” creating an imbalance of the nerve and muscle function. As a result, babies can have life-threatening problems with waste elimination. The common treatment is a “pull-through” surgery in which the portion of the intestines that doesn’t work is removed, and the healthy part is connected to the anus.
Carter was in very good hands. Well-known in his field, Dr. Allshouse is also a medical advisor for the Pull-Thru Network, a national support group for families with children born with anorectal malformation and colorectal disorders, such as Hirschsprung’s.
“Ten to 15 years ago, patients always got a colostomy for this,” said Dr. Allshouse, who performed the laparoscopic procedure when Carter was 11 days old. “Now we can do it without a colostomy and in newborns, and it’s minimally invasive. My goal as a pediatric surgeon is to perform operations that will last children their entire life.”
Carter’s parents are especially grateful for Dr. Allshouse. “To end up with Dr. Allshouse who embraces kids with special needs is a bonus,” said Sara. “It’s not common that a surgeon has the expertise that he has.”
Children’s treated Carter for other challenges, including a hole in his heart and hypospadias, a malformation of the urethral tube. Combined with Carter’s smaller than normal head and facial characteristics, and considering a previous case he’d seen, Dr. Allshouse feared Carter might have a more serious underlying condition – Mowat-Wilson syndrome. Accompanied by Hirschsprung’s disease, this rare genetic abnormality affects many parts of the body. There are only 179 cases of Mowat-Wilson syndrome worldwide.
Based on Dr. Allshouse’s experience, Sara asked if Dr. Joseph Shen, Children’s clinical geneticist, could test her son for Mowat-Wilson in addition to the other potential causes of Carter’s condition. “We always take parents’ input seriously,” said Dr. Shen, noting the results confirmed Dr. Allshouse’s suspicion. “It’s gratifying to provide an answer to the family.”
It was Dr. Shen’s first Mowat-Wilson syndrome case and the Hospital’s second.
“At Children’s, we define each patient as a person and not by their disability,” said Dr. Allshouse. “Carter is a little boy with complex problems. That’s why having multiple specialists with experience taking care of children is very important and having all these services in one place.”
Sara said she and her husband understand that Carter will have special needs the rest of his life. In addition to staying on top of the latest information on Mowat-Wilson syndrome, they involve the bright-faced toddler who loves to laugh in various activities “to help him stretch and grow and become the best he can be,” said Sara. She has even contacted Dr. Mowat directly to learn and share information about Carter.
“Carter has had a couple huge advantages – an early diagnosis, and parents who are willing to take up the banner and support him,” said Dr. Allshouse. “That’s very important.”