It’s never easy to hear about babies who undergo surgery, especially newborns. Jodee Reid can relate because her daughter was born with a rare illness and had colostomy surgery when she was only six days old. Below she tells Matisse's story and shares her thoughts and advice on being a parent to a child with an ostomy.
This post appeared on Complex Child. Reprinted with permission.
My daughter Matisse has never pooped. She never even passed meconium after birth. Along with bilious vomiting and an unwillingness to feed, her lack of pooping alerted us to the fact that our baby was sick. We would not know how sick for several months since in the meantime, she was misdiagnosed with a condition called Hirschsprung's disease because it was believed that parts of Matisse's large bowel did not work.
As devastating as this was for us, her parents, we were somewhat reassured to hear there was hope for our baby, namely a surgery that would bring her "working" intestine out through opening onto her abdomen called a stoma. She would be able to poop into a colostomy bag, allowing time for her large bowel to fully develop in its own time and then later she could have another procedure to reverse the ostomy.
Matisse was just six days old when she had colostomy surgery. Having never been through any type of operation myself, I was incredibly scared for my newborn. There were also fears about what she would look like afterward. I was shown one or two pictures of what to expect — stomas that looked like cherries sitting on my daughter’s abdomen. I would need to learn how to change the pouching system and protect the skin surrounding her stoma from irritation. My biggest concern (then) was not about the impact of having a child with an ostomy, but keeping her alive and getting her home where she belonged.
I will never forget seeing her stoma for the first time. There was a bit of horror that my perfect girl now had part of her intestine sitting on her belly, which was quickly followed by a determination to overcome my own issues with self-image and get on with the job at hand — learning how to keep her stoma healthy and clean. Every opportunity I got in the hospital, I handled her ostomy care and it soon became second nature.
Unfortunately, soon thereafter we discovered that Matisse did not have Hirschsprung's since a colostomy didn't solve her inability to poop. She instead had chronic idiopathic intestinal pseudo-obstruction (CIP), a condition where some or all of the intestines have weak, absent or uncoordinated contractions. Meaning the passage of food through the gut is obstructed.
At six weeks of age, Matisse's colostomy was reversed and an ileostomy was then formed by using another section of her intestine that worked slightly better. An ileostomy is similar to a colostomy, but it uses the end of the small intestine (the ileum) to form a stoma, whereas a colostomy uses the large intestine (the colon). Although the basics in changing the pouching system are the same, the care is a little different since the stool from the ileum is not as formed, and tends to be more liquid than stool from the colon.
Initially, surgeons told us that Matisse's ileostomy would be reversed someday. Now almost ten years later, we know that even following an intestinal transplant that she is listed for, she will likely always have an ostomy because her anal sphincter – which will not be transplanted – does not function. So even with fully functioning transplanted intestines, she’ll never be able to pass stool normally.
Matisse found out she would have a permanent ileostomy at 6-years-old. She is aware that most other kids do not have an ostomy. There are times when she feels uncomfortable with how others react to her ostomy bag and knows that some people can be cruel. I'm sure we'll deal with many self-esteem issues in the coming years. Even though Matisse has learned to live with a stoma, she isn't always happy with having it but realizes this is her life.
Here's some advice to other parents on how we’ve coped so far:
Always be prepared! We have ostomy supply emergency kits in both cars, at school, in the prepacked hospital bag, in my husband's backpack that he takes on trips, in my handbag, and at grandma's house. If you don't have one along, it’s pretty much a guarantee you’ll have a leak! We also carry a container with a lid so we can empty her pouch even if there’s no restroom available. Again, it is almost a guarantee that you will have a full bag when there’s no place to empty.
As a little girl, all of Matisse's dolls and stuffed toys had ostomies. This gave her some sense of control over her own situation, as she was able to change their bags and pretend to empty it too. Having the doll helped because there was little fuss when it came time to change or empty her pouch, and less temptation to tamper with it. Matisse is not ashamed of her ostomy, and neither are we. If she doesn't want to hide it, that’s fine with us. If she does, we figure out a way for the pouch to be unseen.
For babies and infants with an ostomy, onesies worked well. This was the best clothing solution we could find to keep the ostomy pouch intact and away from little fingers. When Matisse got older, we started using pouch covers to conceal the contents from view when using clear pouches or when Matisse just wants it covered up.
Try lots of different brands until you find the right products for your child's needs. Most manufacturers offer free samples and it's helpful to chat with an ostomy nurse from time to time, to see what’s new that may serve your child better. They can also offer solutions to mask the output smell. Some ostomates use a water bottle to rinse out the pouch after emptying to reduce odor.
For Matisse’s ileostomy, we use a urostomy pouch that has a tap at the end. At night we can attach a Foley bag to the open tap that allows for any overflow of overnight stool. We use a 2-piece pouching system and only change the wafer when needed to prevent her skin from breaking down. We only use warm water to remove the adhesive part, but in the past have used adhesive remover wipes.
Warm the wafer to make the sticky part more pliable. The wafer is also called a skin barrier or flange. You can warm it with a hairdryer, which is also good for drying the skin around the stoma after cleaning to help the wafer stick. Be very cautious to ensure the hair dryer setting is not too hot for your child's skin.
I talk to Matisse's class at the beginning of every school year. I tell them all about her medical stuff and bring along her medical doll with a stoma, and explain an ostomy in an age-appropriate way. The intent is that the class can get their curiosity out all at once and then hopefully treat her normally. I also send a letter home with the parents explaining things in more detail so they can discuss it with their child if there are more questions. Matisse is able to empty her pouch in the nurse's office at school because it sometimes smells bad, so this eliminates teasing.
We check her ostomy bag prior to going into the water to make sure there are no leaks. Matisse swims but does not tend to submerge too deeply in the water or do anything crazy like diving because she also has a central line. I do try to cover the ostomy with a swim top and/or ostomy pouch cover to prevent others from possibly getting upset when she’s at a community pool. I view the ostomy pouch as no different from a swim diaper for a baby. I take every precaution to prevent an accident, but cannot 100% guarantee it.
For us, Matisse's ostomy is the easy part of her care. She knows how to empty the bag herself and change out the wafer if need be. I hope these tips and information make things a little easier for other parents who have children with ostomies.