Within the first 24 hours after the birth of her second child, Bridgett Demick received some worrisome news from doctors. Hudson, her newborn son, was not passing stool. When there was no stool on the second day, Bridgett found herself in an ambulance with Hudson being transferred from their local hospital to Children’s Hospital of Michigan in Detroit. At Children’s many tests were performed, including exploratory surgery which revealed that his small intestine was twisted — a bowel obstruction that was handled laparoscopically. After the surgery, doctors felt his condition was resolved but Hudson was still pulling away when Bridgett fed him. He had to be put on intravenous feeding (TNP), a method of getting nutrition into the body through the veins. Next, doctors performed a full rectal biopsy which revealed that Hudson had Hirschsprung’s disease.
The Mayo Clinic states Hirschsprung's (HIRSH-sproongz) is a rare condition present at birth as a result of missing nerve cells in the muscles of the baby's colon. There are fewer than 200,000 US cases per year, affecting approximately 1 in 6,500 newborns. Its name originates from the Danish physician who first defined it. The disease is classified into four types: short segment, long segment, ultrashort segment and total colonic. Of the estimated 200,000 cases annually, only 7.5% are classified as total colonic Hirschsprung’s disease or TCHD.
Hudson’s diagnosis was total colonic. At just two weeks old, ileostomy surgery was needed to bypass the affected part of his colon so he could become stronger and ready for the next step in his treatment plan — a stoma reversal and straight pull-through procedure. The doctors told Bridgett they felt this could take place within six months, however, after waiting twenty months little Hudson was still not medically ready for the next step. His surgery has been put on hold until he stops expelling clear liquid and thrives.
“Hudson doesn’t have a life like the normal toddler. So helping him in any way possible to have life-defining experiences is so important to me.” — Bridgett Demick
For the past year, Hudson has struggled wearing an ostomy pouch because of the placement of his stoma and skin irritation. Bridgett says, “I was changing his pouch six to eight times a day. We’ve tried so many brands and products, but they all caused his skin to blister.” Unable to connect with a local ostomy nurse, she turned to a private Facebook support group for advice. There she learned that other infant ostomates experienced the same skin problems as Hudson. Instead of using an ostomy system, some parents were recommending the “double diaper method” and skin protectant products. Bridgett started using two diapers on Hudson, one for his normal diaper and the other is wrapped around his waist to cover the stoma.
Growing up in the Midwest, hard work and perseverance are rooted in the Demick family. Bridgett kept her job as an Accounting Clerk because of the insurance and her husband quit working to give their child 24-hour care. Between losing an income and gaining medical expenses, it’s put an enormous strain both mentally and financially on the family. “Our insurance covers so little product and we use so much to protect his skin. The cost of buying retail ostomy supplies is so expensive,” she said. Although the past few years have been a struggle, they still remain hopeful.
“He is a very happy little boy. All he has known is a life in and out of the hospital. I just want him to have every opportunity in life.” — Bridgett Demick
Unfortunately, in America, there are too many patients that need ostomy supplies and cannot afford them (even with insurance). For this very reason, the founder of OC created an ostomy supply charity group called Kindred Box as part of our commitment to pay-it-forward. Many ostomates have excess products to donate and others don't have any. Making this connection is very important to our mission.
When Bridgett reached out for help, she didn't realize the generosity of our community. Ostomates from around the world donated their own supplies: stoma powders, adhesive sprays, wipes, and skin barrier creams were mailed to her home in Michigan. Diapers were sent through Amazon. We connected her with Corstrata, a telemedicine wound and ostomy company. CEO, Katherine Piette, had one of her WOC Nurses contact Bridgett since Hudson had never been seen by a certified ostomy nurse. They were able to address her needs for accessing lower cost products through medical suppliers like The Parthenon Company, and identify regional resources for ongoing access to care. When the ostomy community bands together, there's nothing we can't accomplish.
Hudson has been through more in the past 36 months than most people will endure in a lifetime. Hirschsprung's disease has changed this family in a way they never expected. Most of all, Bridgett hopes that her son's story will inspire others: “Whenever I seem to lose faith, it’s the kindness of strangers that lifts me back up. It leaves me speechless. My precious baby, when I look at him I see strength and determination. He is my brave warrior! Thank you all for taking care of me, so I can take care of him.”