When a child has a medical condition that requires an ostomy pouch, there are a few extra things a parent needs to know how to do. When your child is very young, ostomy care can be an extra challenge above and beyond the sleepless nights and continual feedings you’re probably still getting used to.
Fortunately, Beaumont Health recognizes parents and caregivers may need additional support with ostomy care, and that’s why they have expanded the Beaumont Ostomy Clinic to provide care for pediatric patients. In some cases, support from Beaumont’s Ostomy Clinic can reduce or eliminate additional visits to the surgeon for routine care, says Sonia Mae Garcia, MSN, RN, FNP-C, CWOCN, nurse practitioner with Beaumont’s Ostomy Clinic.
“If parents or children have pouching concerns or leaking issues or questions about the stoma, or if they just need additional education and support, they can now come and see us,” says Garcia. At the clinic, trained professionals can provide help to avoid skin irritation, answer questions about pouching concerns and offer education about diet.
Here, Garcia provides some must-know information about ostomy care by developmental age.
A word about newborn ostomy care
The whole process of ostomy care can be challenging for parents at the newborn stage. “Education is significant to parents, especially when there is a big adjustment stage. It can be traumatic because parents are dealing with expectations of having a perfect child, so we work hard to adjust our teaching and support based on how they are dealing with their child’s stoma,” Garcia says.
When parents can approach ostomy care in a loving and consistent manner, their child becomes more confident about their own body. “Children take cues from their parents about the surgery and trust is being developed,” Garcia says.
Negative feelings are normal, and Garcia helps parents separate their feelings about ostomy care from their feelings about their baby. Through plenty of emotional support where parents are free to express their feelings, the nurses at Beaumont’s Ostomy Clinic help parents become confident in caring for their child’s ostomy.
Some easy tips for this early stage
- Changing an infant’s pouching system is like changing a diaper, Garcia says. You can’t harm your baby or the stoma, which itself has no sensation of pain.
- Have supplies on hand to keep the process as simple as possible.
- Use very soft paper towel or wipes that have no soaps, alcohol or oils.
- Remove the pouch every three to four days, clean the skin and put on a new pouch.
- An infant’s exponential growth can impact their pouching system, so parents will be adjusting the pouch to meet the needs of their growing child. If your child has grown, learn how to measure for a new size. Contact Beaumont’s Ostomy Clinic to learn more.
Active toddlers are always on the go. Here are some tips for ostomy care at this age:
- Toddlers may assume everyone has a stoma and may engage in exploratory play or pull their pouch off.
- A onesie can help cover everything up during the day, and a baby monitor can allow you to act quickly if your child pulls off the pouch at night or during naptime.
- Much like toddlers learning not to touch a hot stove, they can learn to keep their fingers out of their stoma or keep their pouch on so it doesn’t leak.
- If the stoma is brand new to the child, play therapy using a doll can be helpful for them to learn more about their stoma and pouch.
- Toddlers with a stoma can crawl, bathe, lie on their stomachs and even swim without any additional cover. The pouch is waterproof.
“At ages 4 and 5, kids have more initiative, so they can even be given some direction,” Garcia says. “If parents are comfortable, they can begin to teach their child some simple steps for self-care, like how to empty the pouch and make sure they have extra supplies with them when they go to school.”
“As masters of their world, school-aged children are now capable of self-care and can have more responsibility. They are more independent and have the manual dexterity to change their pouch,” Garcia says.
Parents may need to remind busy kids to empty their pouch, but be sure to praise them when they pay attention to their ostomy care, Garcia suggests, adding that at this age, kids can provide some basic instructions to teachers and other adults if they need assistance with their care.
At this age, kids may benefit from attending a support group. Visit the United Ostomy Associations of America website to see if a group near you exists or consider starting one of your own.
Tweens and teens
Social stress can be a factor at this age, so be prepared to offer lots of support and reassurance to your tween or teen. “If they have concerns about body image, they can talk with us about it,” Garcia says. “Parents should allow their teens to voice concerns and then give them open and honest feedback.”
Any problems with the pouch — as well as any other related issues — can be shared and addressed at Beaumont’s Ostomy Clinic.
“We are so glad to be here to help support children and their families,” Garcia says.
This story originally appeared in Metro Parent, October 2021."