Hirschsprung's disease is a something most of us have never heard of, but it will alter your life forever if you have it. 1 in 5,000 babies are born with this disorder caused by missing nerve cells in their large intestine (colon). We spent some time with one Sioux Falls family who is learning how to cope with a toddler who doesn't know how to go #2.
Marin Hollingshead loves a good game of Spongebob Operation with her family who are Mom Jessica, Dad Matt and 7 year old brother Riley. The 2 year old knows way more than she should about real life operations. Marin was born with Hirschsprung's disease. It's a disorder that affects your ability to have a bowel movement. The nerve cells that tell your body to move the stool through the colon are missing.
Jessica Hollingshead is Marin's Mom. She says, "Some of the problem is she doesn't participate in going to the bathroom. She doesn't have the correct nerves or sensations to know when she needs to go and help herself go."
Marin's pediatrician Dr. Kara Bruning tells us babies should stool within the first 24 to 48 hours of being born. When Marin didn't, that raised a red flag to her doctors and nurses at Avera McKennan. On the day they thought they were going home, Marin was admitted into the NICU. She had tests done and they determined she did indeed have Hirschsprung's. At 5 days old Avera Pediatric Surgeon Dr. Stephen Karl with Avera Children's performed the first of two surgeries for Marin's disorder. He put a stoma in (mouth-like opening in the lower abdomen where the colon can drain) and colostomy bag. After 5 days of not going to the bathroom, Marin finally got some relief.
Dr. Karl performed her second surgery at 9 months called a pull through. Dr. Karl removed the bad part of her colon (with no nerve cells) and reconnecting the good part to her anis. The Hollingsheads can't say enough about Dr. Karl and the whole team on their side at Avera McKennan.
Dr. Karl says, "An operation doesn't fix the problem entirely. It's a long transition for these kids to learn how the body works because it's different for them. And it's a collaborative effort between the primary physician, pediatrician, and surgeon. The treatment will be better if caught early and working together makes that happen."
Marin is on a daily stool softener, antibiotics and now she gets nightly colonics by mom and dad which have helped keep her bouts of colitis down and kept her out of the ER, leaving more time at home for a round of kisses and the family thinks that's a pretty good trade off.
Marin will have Hirschsprung's Disease forever, but as she grows older and understands more how her body functions, she'll be able to control her symptoms better.