What made you want to be a nurse working with children with a stoma, and what do you find most rewarding about your job?
Growing up, my dream job was to be a presenter on Blue Peter. I wanted to travel the world and make toys out of sticky-back plastic and plasticine. However, my grandmother thought nursing was a more honourable profession, with better long-term prospects.
During my training, I enjoyed the surgical wards the most. Looking after a person at their most vulnerable and supporting them and their families through their recovery gave me a sense of accomplishment, and, by increasing my knowledge and clinical skills, I could make a difference.
The elements of paediatric surgery I enjoy the most are getting to know families and having the opportunity to care for children during multiple admissions, as they progress through their staged correction of congenital (born with) intestinal abnormalities.
No parent expects their child to undergo the formation of a stoma. When faced with the prospect, sometimes with little warning or time for preparation, there can be a sensation of their world spinning out of control. The relationship you develop with families can be instrumental in helping them returning to a more normal family life.
Erica is a paediatric surgical advanced nurse practitioner at Noah’s Ark Children’s Hospital
What are the most common reasons for a newborn or young child to be given a stoma? Are these stomas usually temporary or permanent?
In the UK, around three in four paediatric stomas are formed in the first 6 weeks of life. Most of these are formed to correct a birth defect resulting from something that happened in the early stages of the pregnancy. The gastrointestinal system starts developing at the head and elongates as a long tube, rather like a person blowing a long balloon. If at any point in that process something doesn’t develop properly, it will be clear that something is not right soon after birth.
Parents are more likely to consider the colour of their unborn child’s eyes, their sex or even if they will have all their toes and fingers. Therefore, it tends to come as a shock if parents learn that their newborn has no anal opening. However, these birth defects can usually be repaired. Once the problem has been investigated and diagnosed, the surgical team will typically form either a colostomy, ileostomy or vesicostomy on the infant’s abdomen, depending on the specific condition (see box). The creation of a stoma in an infant is not a new procedure; the first such surgery was performed in 1793 by a French doctor on an infant with no anal opening.
Stomas formed soon after birth are usually short-term, lasting for months rather than years. They are often left in place long enough for the infant to have, and recover from, a series of corrective or lifesaving operations to allow for normal growth. In this time, their families often become familiar with surgical terminology and the members of the paediatric surgical team. However, it is important, if at any point you do not understand the information you are being given, to ask for clarity and an opportunity to discuss these concerns.
Walking through our neonatal unit, it never ceases to amaze me how many pre-term infants survive the trauma of being born early. Improved medical and respiratory support has changed the outcome for small infants born before 34 weeks’, and as result the surgical team now operates on infants as small as 800g. It can be a challenge when the choosing an appliance that is suitable for these tiny infants, as it needs to protect the skin from damage and provide storage for the stool on a tiny abdomen on which to stick the appliance.
What is the most important thing for the parents of these children to know?
In the UK, we are not good at acknowledging the natural process of going to the toilet. Having a stoma formed makes people confront a process that usually is hidden from view and gets flushed away, with no thought or understanding of how it gets there.
When a stoma is formed, the process of stool production is not hidden, and this can take time to get used to. Smells and reappearance of food does take some getting used to. No parent wants to show their revulsion when changing their child’s appliance, and it is important that these feelings are acknowledged as normal and not unique to them as individuals.
Any new parent will report that changing the first dirty nappies never goes smoothly, and both themselves and the infant inadvertently end up with mess everywhere. Stoma care is no different, and the best approach is to adopt the ideal of ‘be prepared’. Once the stoma has settled, then the shape or size will not change much. As a result, it is good practice to have appliances pre-cut and everything needed to change an appliance ready at hand in a changing bag.
It is important that parents understand that general care of the stoma does not hurt, as the bowel wall contains no sensation nerves, only movement, and that they can’t damage the bowel by cleaning and touching the stoma.
The appearance of the stoma should be the colour of the inside of the mouth, as well as moist and warm to the touch. If the infant has a stoma formed soon after birth, teaching skills often reflect the application of the stoma bag and how to care for the skin. Parents who have limited experience in bathing, dressing or feeding a newborn shouldn’t be afraid to ask for support if they have concerns regarding their technique. A baby does not come equipped with an instruction manual!
Each stage of development of the newborn will present a new set of challenges. Changing from milk only to a food makes the stool thicker; teething often results in stool being more runny and sore skin under the appliance makes it less adherent. When a baby starts to role onto their tummy, parents may become concerned that the bag is going to explode and empty it more frequently. All of these experiences have been expressed by other parents, and asking the paediatric stoma nurse is the best way to deal with any concerns about the stoma if things become more challenging.
Conditions that most often result in stoma formation in newborns
Bowel atresia or stenosis
A bowel atresia (blind ending) or bowel stenosis (narrowing) can result when the blood supply to the developing bowel is interrupted during pregnancy. This can happen in more than one place. The baby is likely to have a swollen tummy and difficulty feeding, as well as bile-stained vomiting and failure to pass meconium. An x-ray of the tummy will show swollen loops of bowel above the affected section. The surgeon will aim to join the narrowed or disconnected ends of the bowel, which may first require a stoma to be formed above the blockage to decompress the bowel and allow the baby to feed.
Anorectal anomaly
An anorectal anomaly is when an infant is born with either no anal opening or an opening outside of the anal muscle complex, and this can result from a group of variations. An anomaly will usually be diagnosed when the newbown is first examined, but it can be picked up later if the baby struggles to feed or pass meconium. Babies without an anal opening require staged correction, with a stoma being formed to allow feeding and then a surgically created neo-anus at around 4 months of age.
Necrotising enterocolitis
Necrotising enterocolitis is a serious illness, which is more common in premature births, where the gut becomes inflamed and can develop holes (perforations). These perforations may be as small as the head of a drawing pin, but they allow bacteria to leak into the bloodstream and can result in sudden clinical deterioration. Treatment involves forming a stoma to divert stool away from the perforation while it heals.
Hirschsprung’s disease
Hirschsprung’s disease is a condition where the nerve endings that normally help squeeze stool the along colon during the relaxation phase do not develop. This is evident when the passage of meconium is delayed within 48 hours of delivery. The standard approach for surgery was stoma formation and corrective surgery to remove the non-functioning section at around 3–4 months of age. However, surgical techniques have developed, and often the parents are taught to perform rectal washouts on their babies to mimic the normal process of stool traveling through the colon and out of the anus. This allows the infant to feed normally and grow until the surgeon can carry out the primary ‘pull-through’ without a covering stoma. If, at any point, the bowel is not decompressing easily, then a stoma will be formed for safety.
Vesicostomy
By far, most stomas formed in the newborn period relate to the intestinal tract, but infants born with an obstruction that prevents the normal drainage of urine from the bladder down the urethra will have stoma formed into the bladder, called a vesicostomy which can drain urine directly into the nappy. This urinary diversion is performed to prevent damage to the kidneys caused by an increase in pressure that is caused by the obstruction in the lower renal tract.
Where can these parents turn for additional practical and emotional support?
Being the parent of a child, of any age, who requires the formation of a stoma is stressful. If no other family members have a stoma, it can also be an isolating experience, with some families choosing not to tell extended family members. Parents can sometimes feel guilt that their infant or child had to go through an operation.
Social media and the wider internet have provided points of reference for parents at a time of crisis, when the prospect of a stoma being formed can loom large. There are several organisations that offer support in written advice sheets, and some have telephone helplines manned by young people and parents (see box).
In recent years, many adults who have undergone stoma formation have become bloggers, encouraging others who have a stoma to talk about their experiences and offering advice on different aspects of life with an ostomy, such as clothing, relationships or employment. These conversations will often not be appropriate for younger children. However, they can be useful for the parents, as they offer an insight into being a person with a stoma, which can answer questions not yet asked by the child. Frequent hospital appointments and periods of illness will put strain on any relationship between parent and child. Disruption to normal work life and school attendance can have financial consequences for the family. In the UK, children with chronic health needs are entitled to financial support through the Government DLA web page (www.gov.uk/disability-living-allowance-children).
Organisations offering support for children with a stoma
Bladder and Bowel UK www.bbuk.org.uk/children-young-people
Breakaway Foundation www.breakawayfoundation.org.uk
Buttony Bear www.buttonybear.com/charity
Crohn’s and Colitis UK https://crohnsandcolitis.org.uk
ERIC, the Children’s Bowel and Bladder Charity www.eric.org.uk
Junior Ostomy Support Helpline www.colostomyuk.org/information/young-ostomates
Max’s Trust https://maxtrust.org
Mitrofanoff Support www.mitrofanoffsupport.org.uk
One in Five Thousand Foundation http://onein5000foundation.org/aims
Pull-through Organization www.pullthrunetwork.org
Spina Bifida and Hydrocephalus Network www.mitrofanoffsupport.org.uk
VACTERL Association Support Group www.vacterl-association.org.uk
If a child has a long-term stoma, how can parents continue to support them as they get older and go through all the challenges of growing up?
Some children have their stoma for longer than the 6–12 months, and some may have a stoma for life, by choice or necessity. Older children, those aged 8–16 years, account for about 11% of the paediatric stoma population. At this age, the most common reasons for surgery are ulcerative colitis, Crohn’s disease, familial adenomatous polyposis and trauma. Some of this number is made up of young people who had corrective surgery as an infant and their stoma closed, but have opted to have their stoma refashioned for a variety of reasons.
In adolescence, young people may start to wonder about their identity and can become confused about what role they play in family and society. Young people often have the capabilities to be independent. For a young person facing surgery, if time allows, it is important that they can discuss their concerns about the stoma, both with their parents present and on their own. Writing down questions prior to a meeting can give them some control without having to struggle to speak up when sitting opposite their surgeon.
Young people typically live in the moment and make fewer plans than adults, so they may need support and gentle reminders to empty their appliance or ensure their prescription has gone through. Choosing to ignore what they don’t want to see can make them vulnerable to leakage or sore skin.
Young people in the 15–17-year-old group need guidance to manage their healthcare needs and be allowed to make mistakes when they first begin to take control. This is often as stressful for parents as it is for the young person, when the reins of power are transferred to the young person.
Young people who withdraw from their peer group or fail to engage in treatment plans need support. Changes in body appearance and hormone surges leading to oily skin can have hidden consequences, as the young person experiences new difficulties relating to changes in body habitus and hair, affecting the pouch adhesion. Support garments can be useful when undertaking sport activities. Parents will often be the brunt of outburst of anger when their teenage child begins to test the limits of their medical condition.
When a young person is discharged from hospital, social integration can be the trickiest point. They may have concerns about peer reactions and how they will manage any difficulties with the appliance when away from the safety of the home environment. Parents can engage the school before their child returns after surgery, encouraging a staged return into the school’s population to ensure that any missed situations can be identified, as well as putting plans in place so that their right to an education is fulfilled.
The key is to open good lines of communication with the young person, working at their pace and ensuring that they continue to engage in caring for their stoma. Adolescence is a time for experimentation in many aspects of life, and having a stoma may influence the way in which the young person sees themselves, but their ostomy should never be allowed to hinder their potential or define who they are.
Erica Thomas is a paediatric surgical advanced nurse practitioner at Noah’s Ark Children’s Hospital in Wales