Being a parent is an overwhelming experience. It will become the focus of your life and the one you will give all your love to.

If your baby needs a stoma, it gets even more overwhelming in another sense. The thought of any harm coming to your child is undoubtedly terrifying, and your fears may know no end. 

But we tell you one thing right now: Don’t worry! Your baby will be as happy, as healthy, and as accepted as any child  – as long as you arm yourself with the right information to look after your little one. And with this we will help you.

In this article, we will delve into all the questions you must have about your child’s ostomy – why your baby would need a stoma, what to expect after your child’s surgery, and give you 12 must-know tips that will answer everything you might want to know after your child’s surgery.

What is a stoma?

An ostomy, or a stoma, is a surgical procedure by which an opening is created in the body. The most common types are colostomy, an ileostomy, or urostomy. A colostomy is when the opening is created into the large intestine or colon. An ileostomy is when the opening is created into the small intestine or ileum. Lastly, a urostomy is when the opening is created into the urinary system. The position and size of the stoma can vary based on the type of surgery, and the reason for surgery.

Why would a baby need a stoma?

An ostomy is created when a baby’s own excretory system does not function properly and cannot allow for body waste out of the body correctly. The reason for this could be genetic birth defects such as imperforate anus, an underdeveloped excretory system in premature babies, or bowel infections such as necrotizing enterocolitis (NEC). An ostomy helps create a channel to let body waste out of the body with ease. Fortunately, in most cases, stomas in babies are temporary.

There is virtually no difference between a child’s ostomy and an adult’s ostomy. The only difference is, perhaps, that an adult can be more responsible and look after their condition, while a child’s guardians would have to do so for them. Parents caring for children with a stoma can refer to resources that appear to be for adults with a stoma as well. The Farmoderm Knowledge Center can be a very useful resource to get answers for every question a parent may have about their child’s stoma. 

What to expect after a child’s ostomy surgery

It can be frightening and deeply upsetting to see your child right after they have had their surgery, with various medical equipment attached to them. Remember that your child will look to you for comfort and reassurance, so try to be calm. A stoma is complete without sensation because there are no nerve endings in the stoma; so don’t worry about your child being in pain. Feel free to ask any questions you may have about your child’s ostomy to the doctor, nurses, and hospital staff who are there to help you. This is what you can expect right after ostomy surgery of your newborn:

Depending on the type of surgery, your baby’s stoma may start working right away or after a few days. Right after surgery, the stoma will be swollen, and later considerably reduce in size. This is a normal sign of stoma healing. The stitches around the stoma will also eventually dissolve. 

If it is a permanent or a long-term stoma, the stoma will grow with your child. 

Your child will now need a set of products, such as a pouch and maybe a wafer to collect waste from the stoma. While in hospital after the surgery, make sure to learn how to change the pouch and practice enough times in the presence of hospital staff so you can do it yourself with ease while at home. Also, keep note of how often the bag needs to be changed and how much supply you will need to stock up on while in the hospital so you never run short on supply at home.

12 Tips Anyone Caring For A Child With An Ostomy Must Know

Your child has been discharged and has come home after the surgery. You have the supplies your baby needs, and you have practiced the right care enough times with medical assistance. Now that you are in your usual surroundings, you have to be confident to care for your loved one and the stoma without help. 

Here are the 12 tips you must know that will help you care for your child with greater confidence:

1. Always keep extra supplies and change of clothes at hand

You don’t want to find yourself at any point needing bags and not having any at hand. As they say, it is better to have and not want than want and not have!  

Therefore, consider creating a stoma travel bag. It has all the essentials you might need in case of quick bag change or any kind of stoma bag emergency – whether if you are visiting family members or going to any place or on holiday with your loved one. To know what you need in your child’s stoma travel bag and to find the perfect stylish bag to fit all the supplies, check out this article.

2. Use a pH self-balancing detergent to clean your baby, especially around the stoma

Normal baby wipes or baby detergents often contain greasy oils that can stay on the skin and affect how the wafer sticks on the stoma. Use a pH self-balancing detergent to make sure there is no film of oil around the stoma so the wafer can stick properly. We recommend using this product, as it differs from other soaps or care products in the way that it was exclusively developed for the hygiene of a stoma and helps caring for the sensitive skin of your newborn. With its self-balancing formula and the absence of any parabens and petrolatum, it guarantees maximum hygiene for the stoma and the skin around it.

3. Empty the bag when it is ⅓ full

Emptying the ostomy bag in time prevents overfilling. The contents of the bag are waste, and you don’t want it to get into contact with your baby’s skin. Also, make sure to empty the bag before naptime.

4. Learn how to spot if the peristomal skin gets infected

The peristomal skin is the skin surrounding your child’s stoma. The skin should look just like the rest of the abdomen. If you notice any rash or a change of color developing on the peristomal skin, check this article. We have created a full guide on how to assess and manage any kind of skin irritations around the stoma. If you are in doubt, call your pediatrician and he will tell you if it could be a sign of infection.

5. Get the right routine for your baby’s skin

Your newborn’s skin is very sensitive, and with a stoma, this aspect becomes even more important. Therefore, it is absolutely crucial to master the care of your baby’s skin and use the right products. Moisturizing daily with a dermoactive cream helps protect the sensitive skin from any irritations – ideal for babies with a stoma. If absorbed properly, it also does not hinder the adhesive of your baby’s ostomy bag. To perfect the full routine and prevent any mistakes that could cause peristomal issues, make sure to learn about the 10 must-know steps to a healthy skin around the stoma.

6. Expect to see your child’s stoma bleed a little with every bag change

This is because the stoma is rich in blood vessels. Remember, the stoma has no nerve endings, so it cannot feel any pain. If the bleeding is heavy or if it doesn’t stop for a long time, contact your pediatrician.

7. Warm the wafer before applying it

 You can do this by rubbing the wafer between your hands or by using a blow dryer for a few seconds to warm the glue. This will make it easier for the wafer to stick to the baby’s skin.

8. Get an ostomy wrap

If your child is quite active and enjoys activities such as swimming, the wrap can keep the pouch system in place while your child engages in those activities. Alternatively, or if your baby is still really small, you can get a big and stretchy headband or bigger body to keep the bag in place. 

9. Pay attention to your child’s diet

Over time, your child can go back to a regular diet. Nevertheless, in the beginning it is very important to pay attention to the diet as the food they eat directly affects their output. Make sure: 

• • your child chews the food very well
  • to give him/her frequent small portions, perhaps five small meals a day
  • To not give him/her food that is too high on fiber
  • he/she is well-hydrated.

For more information on the right diet and to find out what food has which effect for your baby, read those articles on Ileostomy and Colostomy Diet.

10. Prevent bag ballooning

The bag can balloon if it is filled with too much gas. You can prevent the bag from ballooning by using vents and filters to release the gas. Also check the diet of your baby, maybe it’s consuming foods that increase the gas production.

11. Learn to spot when your baby is dehydrated

It is very important your child is well-hydrated. Make sure you learn the signs that your baby displays when thirsty, or even better, give them water frequently  throughout the day irrespective of whether they ask for it or not.

12. In case of any doubts or questions, call your doctor or stoma nurse

They are there to help you and your baby, so don’t hesitate to call them with any concerns. Yet, in specific situation you must not wait to contact your physician or stoma nurse: 

• • Your baby is vomiting
  • Your baby has high fever
  • Your baby’s output differs consistently from what is considered “normal” from experience (different in consistency, color, smell, frequency)
  • Bleeding is heavy or does not stop when changing the ostomy bag
  • Consistent peristomal skin irritations
  • Your baby show non-stopping pains or seems dizzy, nervous, or does not eat or drink

These can (but don’t have to!) be signs that there is something wrong with your baby’s stoma or health. In any case, it is better to immediately reach a medical expert.

Final Words

As long as you remain prepared and keep in contact with the right pediatrician and nurse, your child will be completely all right. Remember that the internet is full of resources and even online communities of parents whose children have ostomies, so you can find all the tools you need to care for your baby! 

Facebook support groups for parents of children with a stoma can be a wonderful place to discuss your anxieties with other parents who share the same experience and deal with the same problems. For more information on finding the right ostomy support group for you or how to get a stoma nurse, check out this article. 

But most importantly – don’t worry! Your baby can and will have a full, healthy childhood. Your little one will feel the way you think about his/her stoma and adapt to you. So show him/her that it’s not at all a big deal or something to worry about! All your baby needs is your love, warmth, and confident care.

FAQ

If you still have some unanswered questions, here are some of the most frequently asked questions about child ostomy answered:

How do you bathe a baby with a stoma?

You can bathe your baby as you would bathe any baby. You can bathe the baby with or without the bag attached. The only thing to note is to make sure to wash the area around the stoma with a pH self-balancing soap, and not a baby soap or baby wash. This is because baby soaps or washes contain oils that form a film over the baby’s skin and can hinder the wafer from sticking onto the skin.