Caring for a Child with a Pediatric Ostomy - What All Parents Need to Know
Updated: Nov 16, 2022
Danielle Steven, BSN, CWOCN; Myra Varnado, BS, RN, CWON, CFCN
What parents need to know about caring for a pediatric ostomy
It is understandable to be quite nervous when bringing home your baby with an ostomy. You may have prepared for changing diapers but never imagined needing to change an ostomy pouch! Be assured you are already an amazing parent, and you will absolutely get through this challenge. In general, ostomy needs will change based on your child’s dexterity, level of independence, and daily lifestyle. Let’s discuss some unique ostomy considerations for each phase of childhood.
Measure often – Because your baby is growing so fast, measuring his/her stoma should be done at least every week to ensure the hole cut in the pouch barrier is the right size.
Have realistic expectations – Depending on the shape and location of the stoma, a pouch wear time of 24 hours may be completely reasonable and predictable. If you try to extend it too long, leaks and blowouts are more likely.
Tummy time is ok! – It is perfectly acceptable to have your baby on their belly with the pouch on. However, you may want to empty the pouch prior to tummy time to avoid unnecessary pressure within the pouch.
Protect the stoma – There is no need to buy your baby special clothes; onesies are perfectly acceptable. Pants are suitable, too, if the waistline is not at the same level as the stoma. You want to protect the stoma from any rubbing and irritation. In the same way, strollers, car seats, and highchairs should have straps/belts that do not rub against the stoma.
Protect the pouch – As you can imagine or maybe already know, little grabby hands can be an ostomy barrier’s nemesis! Protect your carefully placed pouching system with a diaper, a onesie, or even a little belly binder. Some commercial ostomy manufacturers make abdominal ostomy binders for infants (Search web for infant abdominal binders)
Angle the pouch – Since much of your baby’s time is spent on his/her back, it might be beneficial to place the pouch at a diagonal so that gravity is in your favor whether the Baby is lying down or sitting up.
Recruit backups – Once you feel comfortable with your baby’s care routine, consider accepting assistance from trusted sources such as family and friends. They will need you to provide them with basic instructions regarding your baby’s care, but it can be a source of needed and well-deserved downtime for YOU, even if you only take a walk around the block! It also provides an opportunity for your helpers to become better acquainted with your new little bundle!
Let them help – Toddlers really like to help and begin showing you their independence. Your toddler likely will want to be part of the self-care process, so give them an easy job, like holding supplies or helping to gather supplies in preparation for pouch changes.
Practice play – Some ostomy supply companies have created stuffed animals and dolls with stomas which are excellent tools to help your toddler practice stoma care at playtime. These are soft and cuddly and may be helpful for your toddler to better understand pouching.
Timing – It may be difficult to pick the perfect time to change your toddler’s pouch. Try changing the pouch at a time when your child will be calm for about 30 minutes afterward so that the barrier has time to adhere well to the skin.
Swimming – Nothing about having an ostomy will change your child’s ability to swim and play in the water. Pouches are made so that they keep stool in and everything else out, so swimming with a pouch on is perfectly acceptable. If the pouch has a filter, check with the manufacturer to advise if it needs a sticker placed over it while submerged in water. You will typically find a sheet of stickers for covering the filter in your box of pouches. It may be best to empty the pouch prior to swimming to avoid unnecessary pressure inside.
Encourage independence – Now that your child has had some experience helping with stoma care, encourage him/her to practice changing the pouch independently at home while you can be there to help. Simplify the routine as much as possible, and soon, he/she can go to school without fear of accidents. It’s important to note that preschool and school-aged children may demonstrate modesty in sharing their ostomy, and all efforts to maintain modesty should be taken.
Emergency packs – In the event of pouch failure, keep an extra set of clothes at school, along with a pack of extra ostomy care supplies. It’s also a good idea to include a discreet bag for soiled clothes and another for proper disposal of the soiled pouching system.
Clothing – Whether the pouch is tucked in their pants or remains loose outside their underwear, your child can wear their clothes however they feel most comfortable, as long as the waistline is free from rubbing to avoid irritation of the stoma.
Pouches – Pediatric-sized pouches may still be appropriate depending on the abdomen and stoma size, but for this age, an adult-sized barrier with a short pouch may work best. Transitioning from a pediatric pouch to an adult-sized pouch follows the same principles of care. You may identify the need to advance to an adult pouch when the wafer and pouch no longer effectively manage the ostomy, whether the issue is the wafer fit, the pouch capacity, or something else.
Independence with self-care – Teens are generally independent in providing their ostomy care; however, it is important that they are well-versed in dealing with common problems such as leakage and simple peristomal skin issues. They should well understand when assistance is needed in the event they are having issues. They also need to follow the same suggestions noted previously regarding emergent issues when they are away from home. Teens should ensure at all times that they are prepared for a pouch change and a change of clothes if indicated. This care can be performed more comfortably in a Family Restroom if available. Including a discreet bag for disposal of the soiled pouching system and to contain soiled clothes is also a good idea.
Social – When your teen is comfortable and ready, encourage them to speak candidly with friends about their ostomy and learn how to discuss the reasons for their surgery. They might be pleasantly surprised at the freedom and confidence this provides. The UOAA and other ostomy-related groups have resources for teens and can assist in connecting them via support and discussion groups. The UOAA has a Youth Rally every year for teens, which fosters adolescent relationships that can be lifelong.
Activity – Participation in sports is completely safe if no direct assault is made to the stoma. If there is a risk of injury, the use of a plastic stoma protector is advised. For security and comfort, consider the use of an ostomy binder made for high levels of activity. One-piece appliances may also provide better levels of security.
Supporting your Child
Important adults in your child’s life - Through the years, there will be individuals who play a significant role in your child’s life and will be instrumental in their feeling of acceptance. Teachers, coaches, and school nurses need to be notified that your child has an ostomy. There may be times when your child cannot delay visiting the restroom, and these individuals play a key role in providing support and discretion. Many ostomy manufacturers have developed written tools with basic ostomy information that are an excellent resource for teachers and other school personnel to better understand your child’s needs.
There are peer support groups for parents of an ostomate as well as young ostomates that you should reach out to. Being part of a community that understands you and your child’s needs can significantly improve your mental outlook and coping strategies. As your child matures, help them to know their rights through the American Disabilities Act (ADA) and how to use them appropriately. Take heart; you are doing a great job and are in great company! For any further questions or concerns, contact your friendly WOC nurse!
Costrata has pediatric ostomy nurses on staff to assist with any age child, from infants to teens. We welcome the opportunity to work with you and your child. You can find additional information about our ostomy services on our website.
Contact us at www.corstata.com or call 1-800-566-1307