Children and babies with a stoma
If your baby or child gets a stoma it can be scary. You’re still in the flush of the birth and something appears to be wrong, or your child who deserves a happy life, has been sick for a while. A baby or a child with an illness and / or a stoma can be taxing for the whole family and can have an enormous impact. Certainly for the parents, who get many extra tasks and responsibilities. This can significantly affect the energy, time and attention and through this consequences in the daily life, which can appear very different from a “normal” family. Parents sometimes extend themselves to make the quality of life as high as possible, because they want their child to have as normal and happy life as is possible. In a family with more children the parents are sometimes afraid that the rest of the family miss out because of the extra attention that is given to the child with an illness and/or a stoma. It is very important to find a balance there. Children are very loyal and often feel more than you realise. Therefore it is better to involve your other child/ren with everything to do with the child who has an illness and/or stoma, rather than try to ignore it. Of course it also depends on the age and abilities of the children. But children are happy to support and like to have a practical involvement. Sometimes it feels as if you need to split yourself to help everyone, because of course your partner also wants enough attention. Therefore keep talking and also think about yourself.
Information used from the magazine Top Sante
A premature baby with a stoma
Babies with a stoma
Small children with a stoma
The personal story of Miranda and her son Joey
The personal story of Marieke and her son Pepijn
A premature baby with a stoma
One of the most common intestinal abnormalities in the case of a premature baby weighing less than 1500 grams is Necrotizing Enterocolitis (NEC). It is twice as likely to occur in boys as it does in girls. In NEC there is inflammation due to immaturity of the colon whereby the intestinal wall is affected which can in turn lead to necrotisation and perforation of the intestine. The precise reason for this is not known, but it is clear that the risk of NEC is greater the more premature the baby. Also the seriousness of the course of the disease is determined by the length of the pregnancy: how shorter, how more serious the disease.
Whenever NEC arises, the newly born baby becomes seriously ill. The child has a swollen, shiny belly and the blood vessels are clearly visible; it can also require more oxygen, vomit or have blood in the intestines. A stomach scan can confirm the diagnosis. In less serious cases they can try to control the disease by stopping feeding (bottle, breast or feeding-tube), by administering antibiotics and providing intense back-up.
Unfortunately, it is often necessary to operate on the baby to remove the diseased part of the intestine is removed and to place a – frequently temporary –stoma. In the last decade the newly born child’s chance of survival in the case of NEC has increased considerably due to better treatment and is now around 60 to 80%.
The skin of a premature baby is much thinner and more sensitive than that of a child or adult. Fortunately, nowadays stoma material is also suitable for sensitive skin so that a baby should generally not have too many problems. It is best to choose a wafer that is not too adhesive, otherwise the skin could quickly become damaged. When the baby is a few months old and moves around more, then you can choose a wafer that has a stronger adhesive. Since a (premature) baby has a very round belly and you must not interfere with the breathing then a 2-piece system which is less flexible is not such a good idea. A one-piece system is more supple since there is no hard ring and is therefore better for the baby. The one-piece system can stay in place for 48 hours and can be emptied from the bottom. Below you can see a tiny stoma bag measuring 12 by 5 centimetres.
Picture source: the book
Baas op eigen buik
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Babies with a stoma
Every year hundreds of babies are given a stoma. Usually as a result of a congenital abnormality, for example, an abnormality of the bladder, a neurological abnormality, Spina bifida (also known as open back), Hirschsprung’s disease (a disorder of the large intestine), an ileus (an intestinal obstruction) or anus atresia (born without an anus).
Fortunately, in babies, a stoma is often temporary and it can be removed after a time, although it is still a shock for parents to see their newborn baby with a little bag on its stomach. Luckily there are special stoma nurses for children and they can help parents to cope and learn how to care for a stoma.
80% of all children’s stomas are estimated to be placed shortly after birth. One baby in ten receives a stoma in the first year of its life.
The remaining 10% are children up to the age of 18. In general, most stomas placed on premature babies are removed again before they reach the age of four. Not more than one in ten children has a stoma after the age of four and at the age of twelve it is only one in a hundred.
With babies the stoma can be positioned in a totally different place from adults. One of the most important considerations in placing a stoma on a baby is to spare the tissue as much as possible. This is in sharp contrast to an adult where the optimal place is considered. In babies a urostomy is often positioned as close as possible to the kidneys so that the intestine does not need to be used. As a result the stoma is placed on the side/flank instead of on the stomach. Since it is often difficult to place a stoma bag here, a (high) nappy can be the solution.
Another difference with the adult ostomate is the skin. This is much thinner and not yet fully developed and therefore requires more attention. A newborn baby’s skin is not structurally complete and cannot protect itself against outside influences. A baby’s skin is also more susceptible to infection and fungi since the protective PH layer is not yet completely present. There is also much less space to attach a stoma bag; the navel, hips and rib cage are all close to the stoma. The surface area of a baby’s belly is comparatively smaller than that of an adult. The belly is also in continuous motion through respiration and is very rounded which makes it more difficult to fix stoma material.
There is a much more limited choice of stoma material for children, although it is improving all the time. It is important that a system for babies is very flexible so that it can move. Babies’ stoma bags are not just a smaller adult version. In relation to their length and body weight babies produce far more faeces and urine than adults. Only as children get older can they make do with a smaller version of the stoma bags for adults. A one-piece system is also better than a two-piece system for babies. In a one-piece system there is no hard ring so that it can move more freely with the body. Also a baby cannot yet tighten his belly which is often necessary when fixing a stoma bag to the wafer in a two-piece system. However, if a baby’s tender skin cannot cope with the frequent changing of a one-piece system, then a two-piece system is, of course, a good alternative. There are special two-piece systems on the market where the bag can be attached without putting too much pressure on the wafer.
Brands from left to right:
The care of a baby’s stoma is not that much different from that of an adult. One major difference is, of course, that a baby cannot look after his or her own stoma and so the parents or carers must do this. It is important to create a relaxed atmosphere so that the baby is calm. You can do this by first letting him eat or drink and then maybe starting with a bath (with or without stoma material). Also a dummy or some other toy can calm the child and keep him quiet. Moreover, the warm bath water ensures that the wafer is supple and can be removed more easily.
During the care the (paediatric) stoma nurses advise against using baby towels. The oils which are added to this towel, can cause leakages. Also allergies can develop because of the unnatural ingredients such as perfume. With a baby it is advised to attach the stoma bag so that the opening hangs to the side, so that it is easier to place in the nappy. For a baby with a stoma it is handy to use a nappy pack or a romper suit with poppers on the under side, so that the little one cannot pick the stoma bag loose. Shorts are also suitable for this. The stoma material can adhere less well if there is a fever, just been vaccinated or is teething.
In relation to their body weight babies produce a lot more bodily fluid than adults. In the case of a newborn baby of 3 kilos that is approximately 800ml a day. As a result young children can quickly dehydrate and suffer from saline deficiency. If they have an infection or react to a vaccination they can have thinner, runnier faeces than normal. Extra care must also be taken when introducing new food, for example a piece of fruit or potted baby food. This must be given in much smaller amounts and more slowly than is the case with other children, If the food does not go down well, then the child with a stoma can have much worse problems with runny faeces than a child without. Therefore, only give a few small bites the first time, a table-spoon at most and see how your child reacts. Increase the amount slowly over the next few days and see how the bowels react.
As a parent it is important to keep an eye on the stoma output to prevent dehydration and saline deficiency. What should you look out for? An alarm bell should ring if the baby urinates less and the nappies are dryer, if the child has a dry mouth and tongue, a dry, whitish complexion, suddenly loses weight, is tired and irritable and the eyes sink into the face. If you think dehydration is a problem then you should consult a doctor or stoma nurse immediately. Until then, you can give the child ORS (oral rehydration salt) for adults (not the one for children as this has too little salt). These are bags with a saline-sugar solution which you dissolve in water and which are available at your chemist.
Very often after a certain time the stoma can be operated and removed.
Babies who had a stoma after their birth risk developing nappy rash after the stoma has been removed. Because of the stoma they have never had waste in their nappies. In some hospitals they smear a little faeces round the anus and buttocks to accustom the skin to the waste. In the case of nappy rash it is important to change the nappy regularly and to wash the buttocks with luke-warm water and to pat them dry (not wipe). You can also use a protective cream such as zinc ointment (Calendula), barrier cream, Cavilon or Orabase. It is a question of trying out which is best for your baby. You can also buy special zinc creams at the chemist. You do not need a prescription. The disadvantage with these products is that they can leave bleach marks on clothes and bedding which are difficult to remove. Some nappies can also cause an allergic reaction, which can only exacerbate the nappy rash. If the situation deteriorates and thick red patches form, then it may be a fungal infection. Only a prescription ointment is of use here.
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Small children with a stoma
Children are usually given a stoma as the result of a chronic inflammation of the large intestine, such as Crohn’s disease, Ulcerative Colitis or Poliposis Coli
(or polyps in the large intestine) or if part of the intestine dose not do its job – chronic constipation, cystic fibrosis or if the intestine is obstructed. Experience with children shows that from the age of around three they can manage their own stoma very well if they have had it from a young age. They put up with it, they do not know any better and it is part of their body. As they grow older they become increasingly aware that they are ‘different’. How they cope with this depends on the individual. You often feel separated because your friends and class mates do not have a stoma, which is different in their eyes. In this phase it is very important how the environment reacts about the stoma and to treat your child normally. As they grow up children become more aware that they are “different”. They have to deal with friends, the gym and their first love. Every person reacts differently. This also depends on the environmental reactions. It could be good for your child to give a speech at school. In such a way everything is approachable. However there are also children who do not want to talk about it, then it could be good to talk to the teacher about it.
Picture resource: the book
Baas op eigen buik
Just like babies, children also produce more bodily fluids in relation to their body weight than adults and so a child can dehydrate more quickly and suffer from saline deficiency if the faeces are looser than normal. Try to prevent this and look out for the same characteristics as with babies. If it is not possible for the child to maintain an adequate level of saline then salt tablets may be a solution. The same things are true for children as for adults. They can take part in sports, swim and wear attractive clothing; care and diet are also the same. Some parents find it more practical to serve the main meal at midday instead of in the evening so that the stoma bag will not be full to bursting the next morning.The skin of children up to 11 years old is much thinner than that of adults. Therefore skin problems can develop quicker, because allergens pass quicker through. On the other hand the skin of a child heals quicker, precisely because it is so thin.
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The personal story of Miranda and her son Joey
"Joey Jacobs was born on 23 March 2002 in Waalwijk. He weighed 2800 grams and was 50 cm long. A dream of a baby and completely healthy. The first weeks were a delight until it appeared that his bowels were not working properly. When Joey pooped he produced little droppings that were small and hard. But because you often hear that bowel movements are not always as they should be in the beginning I was not too worried. Months passed and the situation got no better. If fact it was becoming more difficult. Sometimes we were up all night because he was howling with pain.
In the end I went to my GP. He told me that it was probably his intestines and that it would clear up of its own accord. But weeks later it was still the same. I started trying things out for myself, such as a bit of oil in his milk, fennel tea and much more. Finally after repeated visits to my GP I got a referral to a paediatrician.
After my first visit with Joey He was given a prescription for Lactalose, a sort of syrup, to make the faeces thinner and more fluid. I gave him this for some months but it made no difference. Then Joey was given medicines such as Movicolon, Transipeg, Macrogolum powder but again to no avail. On our umpteenth visit to the paediatrician it was decided to keep him in hospital for a few days and give him incremental enemas. This happened so often that my son has remained traumatised. We discussed this with the paediatrician who then suggested that he should stay a week in hospital and have colon irrigation. A laxative was introduced via a nasal tube into his intestines so that they were completely clean. The first time after irrigation he pooped once a week. This was indeed progress, but unfortunately it did not last long. He blocked up again and opened his bowels only once every three to six weeks.
Altogether Joey was irrigated four times in the hospital. As irrigation also had no effect he was examined in a hospital in Utrecht for Hirschsprung`s disease. An MRI scan was also carried out to check for spina bifida. These tests showed that there was no indication of Hirschsprung’s disease or spina bifida. Of course, this was good news for us but did not help us much as we still didn’t know why he was unable to open his bowels. I began to have doubts myself and once again went to my GP to discuss the problem with him. He advised us to try osteopathy, which is used in young children to get rid of tension and stress. I thought to myself; even if it doesn’t do any good, it can certainly do no harm. After all you will do anything to make your child better. But this did not seem to be the solution.
We spent three years like this: in and out of hospital. Until one day my mother read something in de Volkskrant about the faecal unit at the AMC in Amsterdam. I sent them an email with a brief resume of Joey’s diagnosis immediately after reading the article. I quickly received an answer that I could arrange an appointment via my paediatrician. We went to the clinic for the first time in December 2005. We discussed the problem at length. In January 2006 Joey was briefly admitted for a manual faecal cleansing ( removing the faeces by hand). Approximately two to three kilos were removed. Since in Joey’s case it was an extremely severe case of constipation which was very difficult to treat and given that he had been traumatised by all the different procedures, it was decided that a stoma was the best option. On the 27 April 2006 everything was ready. Joey was admitted to hospital for a double loop colostomy.
The stoma care is going well. In the beginning it was a case of getting used to it, but with time the procedure has become faster. Joey also has no problem with the cleaning of his stoma and even helps a bit. I have also bought some stickers. When the stoma has to be cleaned, he can choose a sticker and put it on the stoma – so it is more of a game. Joey uses children’s bags from Dansac Nova (15mm 1-piece). I put in Gellymate - a capsule which thickens the faeces and so helps prevent leaks. I put a piece of gauze on the fistula since he doesn’t like plasters. Once every two weeks we irrigate the fistula so that this also remains clean.
Everything is going well at the kindergarten. Everyone in his class knows that Joey has a stoma, together with Joey we made a point of telling the children about this; he even went round to show off his stoma and give the kids a chance to ask questions. It is important at school that the children know since they can be very mean to one another. It is possible for the stoma to leak and smell at school and then it can be problematic if the children don’t know anything about it and consequently insult or ignore your child. Fortunately this has never happened to Joey. We have arranged with the teacher for her to empty and replace his stoma bag should this prove necessary. Joey has no limitations. He even sleeps on his stomach, he does whatever the other children do. He has just started swimming lessons which he really enjoys. Joey accepted his stoma right from the very beginning. I have noticed that parents often have more of a problem than the child itself.
There has been talk of giving the intestines a rest for a few years. Depending on how the stoma works out it will be decided whether there will be a continuity recovery with or without a sigmoid resection (removal of the large intestine). Even after this it is not sure for either us or Joey whether everything will be all right in the future, but we are optimistic. One thing is certain: his stoma has given him new life. He can play again and has no pain. And that’s what you do it all for."
Raymondo, Miranda &
Joey Jacobs from Waalwijk
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The personal story of Marieke and her son Pepijn
"Hirschsprungs disease is a congenital intestinal disorder in which there are no nerve cells present in a certain part of the (large) intestine. Peristalsis therefore (partially) does not take place and chronic constipation is the result. The disease affects 1 in 5,000 children. A fairly rare disorder, and like most people I had never heard the name Hirschsprung before.
When my son Pepijn was born, since he was two months premature he was taken to the Juliana Children’s Hospital in The Hague. There they discovered in the first few weeks that Pepijn’s intestines were not working. The first bowel movement (meconium) did not happen. But after repeated attempts to help this along with enemas, it was still not happening. Initially the premature birth was held responsible as the intestine were not yet fully developed but after a few weeks it became clear that there was more to it than immature intestines. After numerous tests the name Hirschsprung was mentioned for the first time.
In the meantime Pepijn had become so ill as a result of all the faeces mounting up in his intestine that his condition was deteriorating by the day and the doctors were afraid that he wouldn’t survive. A premature baby of less than 2 kilos is rarely able to fight infections. It was quickly decided to operate on Pepijn in order to examine his intestines more thoroughly. They also wanted to give him a stoma in order to give his intestines a rest. The operation lasted hours and Pepijn came back to IC with a stoma. He was six weeks old at the time.
I had never even seen a stoma, let alone looked after one before and that was now going to happen. The big bag on his tiny belly covered everything so that there was nothing to see of the stoma. And deep in my heart I was happy about this as it really gave me the creeps. The next day a stoma nurse came along to initiate us into caring for a stoma. When the bag first came off I didn’t want to look but I was unable to avert my eyes. Jan Wolkers’ Roos van Vlees sprang to mind and fear quickly gave way to fascination. What a wonder that this could be made from a natural human organ! The various wafers, bags and fastenings were demonstrated and I got to know a new world. As sick as Pepijn had been during the early weeks, he now just as quickly recovered. After a few more weeks he was able to come home with his stoma. I was so happy I thought that I could take on the whole world.
At home it seemed that looking after a stoma was a little more difficult than I had first thought. Wafers that did not want to stick, bags that leaked and a stomach whose skin got redder and rougher. I was sometimes quite desperate. Fortunately, the stoma nurse had the patience of a saint and taught me new tricks and tips all the time. And what I had first thought to be impossible, in fact happened: both Pepijn and I got used to the stoma. We went to swimming class for babies and I stuck an opaque bag on his belly. No problems!
So when I heard a few months later that Pepijn would have to be operated on again and that maybe his stoma could be removed I was extremely worried. The stoma was working well, so why on earth should we change things? Nevertheless, Pepijn underwent another operation and his stoma was removed.
He is now 9 years old and still does not have a stoma. If that can continue, I have no idea , nor do the doctors. Irrigation, airing with canulas and enemas are part of everyday life. As long as things are fine, we are happy. Children with Hirschsprung’s do not necessarily have a stoma but sometimes there is no other way. In any case I was very positive about the time with a stoma. Doctors think that a stoma is a last resort and I agree with them. A stoma can have unexpected side effects as I noticed with Pepijn. On a number of occasions he showed signs of dehydration and could not eat everything. But this is all very personal. . People with Hirschsprung and/or people with a stoma cannot be compared with one another and I think that we should not try to do so. Will he have a stoma again? Who knows. In any case I now know that there is nothing to be afraid of!
Lots of love,
Compiled from the following sources; the book 'kinderen met een
de Nederlandse stomavereniging, the information brochure 'Wat heb jij nu op je
buik, Emil' from
'Stomazorg bij kinderen' from