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 was originally published on Complex Child.
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 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 surgery myself, I was incredibly scared for my newborn. There were also fears about what she would look like afterwards. 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 her pouching system and protect the surrounding skin 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 the 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 realized that Matisse did not have Hirschsprung's since a colostomy did not solve her inability to poop. Instead, she had chronic idiopathic intestinal pseudo-obstruction, 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 formed by using a section of her intestine that worked slightly better. An ileostomy is similar to a colostomy, only it uses the end of the small intestine (the ileum) where as a colostomy uses the large intestine (the colon) to form a stoma. 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 formed and tends to be more liquid than stool from the colon.
Initially, surgeons told us that Matisse's ostomy would be reversed some day. 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. Her anal sphincter – which will not be transplanted – does not function, so even with a fully functioning transplanted intestine she’ll never be able to pass stool normally.
Matisse found out she would have a permanent ileostomy at six-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 others can be cruel. I'm sure we will 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 is advice to other parents on how we’ve coped so far:
Always be prepared! We have ostomy emergency kits in both cars, at school, in the prepacked hospital bag, in my husband's day backpack that he takes on trips, in my handbag, and at grandma's house. If you don't have one, it’s pretty much guaranteed you’ll have a leak! We also carry a container with a lid so we can empty her pouch even if there’s not a 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 bag and pretend to empty it. Having the doll helped because there was little fuss when it came time to have her pouch changed or emptied, and less temptation to tamper with it. Matisse is not ashamed of her ostomy, and neither are we. If she does not want to hide her bag, then that’s fine, and if she does, we figure out a way for it 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 intact and away from little fingers. When Matisse got older we started using ostomy pouch covers to conceal the contents from view when using clear pouches or when Matisse just wants it covered up.
Try lots of different ostomy brands until you find the right fit for your child's needs. Most companies offer samples, and if you can, chat with an ostomy nurse from time to time to see what’s new that may serve your child better. Your ostomy nurse can also offer solutions to mask 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 the overflow of overnight stool. We use a two-piece bag and only change the wafer if it is peeling off to help prevent skin breakdown when removing adhesive. We only use water to remove the wafer, but in the past have used special 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 hair dryer, which is also good for drying the skin around the stoma after cleaning to help the wafer stick. Obviously, caution is needed 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 manner. 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 to parents explaining in more detail so they can discuss with their child if the child has more questions. Matisse is allowed to empty her pouch in the nurse's office at school because it sometimes smell bad, so this eliminates teasing.
We check her ostomy bag prior to going into the water to make sure there are no leaks. Matisse does swim, 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 in 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.