There are many possible reasons why a child may need a stoma. In this blog post, I look into some of those reasons. Without further ado, let's get started.
1. Hirschsprungs Disease - This reason had to be number 1 as it's what my brave little man inherited from myself, the reason for our ostomies. Born with non functioning colons we needed them completely removed along with 3cm of small intestine. Hirschsprungs Disease occurs when the ganglion nerve cells are missing from the lining of the intestine, which are required to move waste along. The amount of intestine and which part is affected varies from person to person. A rectal biopsy is carried out in newborns if Hirschsprungs is suspected to confirm diagnosis. A stoma is formed with the aim for it to be temporary, however this is not always the case. See my blog here on how our story played out.
View this video to see a video graphical representation here.
2. Inflammatory bowel disease (IBD) is the name given to Crohns Disease and Ulterative Colitis collectively. It is rarely found at birth with most being diagnosed between the ages of 15 to 35. It can be extremely debilitating and life changing with no cure, but stoma surgery is often needed with the immune system attacking the bowel causing inflammation. This can cause damage, obstructions and leaks. Many find they can manage their symptoms with medication and surgery. Crohns and Colitis UK has a wealth of information as does social media with a large community of people sharing their stories.
3. Birth defect - Rather than a specific condition causing the need for a child to need stoma surgery, a defect such as short bowel syndrome where a large portion of the intestine does not work correctly could be the reason. Bowel resection surgery may require a stoma used if the bowel is extremely damaged and needs staged surgeries for repair. An imperforated anus where the opening to the anus is missing or blocked meaning the contents of the rectum can not be released is rare with urgent surgery required also.
4. In some cases the anus can be missing with the colon or rectum entering other parts like the bladder or vagina. As you can imagine, this can lead to chronic infections and obstruction. This can be a huge shock for parents who didn't anticipate complications such as this during pregnancy. There is a lot of support available online on how to deal with this such as the video here.
5. Present in 1 in 50,000 births Cloacal malformation is where the rectum, urethra and vagina fail to separate into separate tubes. Present at birth it develops very early on in pregnancy in girls requiring immediate surgery. This includes stoma surgery to allow waste to leave the body correctly and avoid infection. An x-ray and physical examination will confirm diagnosis, and families should be supported psychologically. A new urethral, vaginal and anal opening will need constructing through more surgery when the baby is a few months old. The stoma is aimed to be temporary with closure surgery planned when the rest of the anatomy is repaired to allow the normal passing of stool through the new anus.
There are other conditions of course which require stoma surgery, the Great Ormond Street Hospital website I have always found to be very user friendly, explaining conditions with lots of detail and diagrams to visually support the reader. JOSH is the Junior Ostomy Support Helpline. A source of great comfort for parents of children with stomas, their helpline can be used to ask questions however big or small. I have found the stoma nurses to be the greatest source of comfort, having first hand experience their knowledge is imperative. I am very lucky to have stoma nurses for my little man with work phones, where I can text when I have concerns. Email and text is the quickest form of communication I have found, with nurses understandably not tied to a desk where the phone rings in an office.
Tommy’s is a pregnancy charity which shares valuable advice for parents taking home a baby with a stoma. It can be quite overwhelming the amount of information you need to retain for caring for your newborn. Sleep deprivation, feeding around the clock and accepting the diagnosis makes for a difficult time. Tommy shares what you should look out for where contact with your stoma nurse should be made:
- blood is coming from inside the stoma opening and doesn’t stop (it’s normal for the stoma itself to bleed slightly at first)
- the stoma changes colour or looks purple, black or blue
- the stoma starts to sink into the body (retraction) or stick out (prolapse)
- your baby is producing more or less poo than usual
- the skin around the stoma looks irritated and sore
- your baby isn’t putting on weight.
Taking a baby home with something you didn’t expect is heartbreaking. Give yourself, your family and friends time to mourn what you thought would be. You will find your new normal and from my own personal experience I can tell you that these children are one in a million. The bravery and courage they show is remarkable and will make you feel more proud than you ever thought possible.
Until next time, Rach x
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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