THE PSYCHOLOGICAL IMPACTS OF SBS
Being a parent for any child with a chronic illness is very stressful. Many studies have shown that parents of children with chronic illness are likely to report much higher levels of anxiety and depression and these experiences can last for several years if they are not treated.
Many people agree that parenting generally is hard work, but parenting children with a chronic health condition is a very different and more challenging experience. There are a number of ways that parents of ill children may have to behave differently with their children.
In the new born period all parents have to adjust to the reality of having someone who is totally dependent upon them. In this early period being close to your baby, breast feeding and lots of touch and eye contact all promote strong bonds that should hopefully last a lifetime. If your baby is chronically ill and is sometimes in hospital this can interrupt parents’ abilities to bond with their baby. You may not be able to feed your baby the way you wanted, your opportunities to touch and hold your baby may be far fewer and you may worry that your baby could die. Babies with short bowel can have significant problems feeding and this can lead to parents feeling frustrated and sometimes even rejected.
However there are some things that parents can do to try and increase bonding. Try to be involved in caring for your baby as much as possible. Doctors and Nurses will be very happy to support you in doing this. They know how important the early bond with your baby is; in fact it is critically important. They will encourage you to hold and touch your baby as much as possible. While it is unlikely that you will be able to feed your baby in the usual way, they will encourage you to be involved in feeding preparations and to make eye contact and speaking gently to your baby while you are preparing and managing the feed as though you were feeding them yourself.
Older Babies and Toddlers
As children grow it is natural for them to want to learn more about their environments and to want to explore and start to understand the world. As a parent of a chronically ill child there can be a temptation to wrap your children up in “cotton wool” and to try and be overly protective. Parents who rush for the wipes to clean their child every time they touch something or try and put things in their mouths, is understandable, but may stop your child having normal learning experiences. With reasonable precautions it’s very normal for children to get a bit dirty and sticky. Sometimes being too clean and too attentive can make children fussier and can cause problems when your child is well enough to start introducing food. Similarly older children should be able to start to think about waiting (even if only for a minute) before getting what they want. Attending to your child’s every whim and fancy is not always the best way to encourage good behaviour. Regular play times will show your child that you are a loving parent. Messy play is often a good idea and you’d be surprised how much fun wet pasta can be for young children. Jelly and other squidgey things can also be a good idea, but do make sure with your dietician that it won’t matter if your play food of choice is suitable for your child, in case some ends up in their mouths.
Parents of children with short bowel most commonly face difficulties with eating and get very concerned about this. In fact this is probably the number one concern of most parents. Children who have been chronically ill and had some time with NG tubes or TPN have often missed important parts of their early eating developmental pathway.
As stated above, it is often very distressing for parents to have a child who can’t or won’t eat. Parents can become very concerned that their child will not get enough nutrition and starve. You need to be very patient with your child’s eating. Your Doctor and the team will not allow your child to starve. Remind yourself of this. The more you become stressed about eating the more likely it is that your child will develop a problem with food. Your child is likely to have to follow a special diet. This can be difficult to mange especially if you have other children to cater for as well. Try and make meal times as normal as possible. We have found the following things to be VERY effective,
Your child should learn to associate certain times of the day with food. Breakfast when you wake, lunch at midday and dinner in the evening. Small healthy snack times are good too.
Families should try and eat together, if possible everyone should eat the same food and this is best done at a table.
Televisions computers and toys should not be on or around during dinner.This is a social time when all the family gets together and enjoys their food and time together.
If your child is old enough, encourage them to feed themselves. Try not to coax or cajole your child to eat, but make a great big fuss of them when they do manage to eat something.
Use a small plate and don’t over load it, you can always add more!
NEVER force feed your child. You may feel like you have to just to get something into them. Trust us in the long run you will make things MUCH worse.
Persevere! On average children who haven’t had early health problems take up 20- 30 tastes to decide they like something. Your child with short bowel is likely to be more sensitive to changes in texture, flavour and consistency. They may have missed out on important early feeding development. Don’t be tempted to serve the same “safe foods” over and over again just because you know they will eat them. Try to be as varied as their diet will allow.
Problems with eating can be persistent and frustrating. You can get support and advice from the team involved with your child. It’s easy to say but DON’T PANIC! Try and be calm around mealtimes, children are very sensitive to tension and stress around them and you will often find this can make the problem worse.
Getting your child to sleep is again a common problem for lots of parents. Young children need much more sleep than adults, as much as 10 – 12 hours and more for babies. Having to get up to check on overnight feeds and give medicines is very disruptive and can seriously damage sleep patterns. (Yours as well as your child!) You may find it hard to settle them to sleep or get them back to sleep when they are awake.
Try and build a regular bedtime ritual.
Medicines and feeding machines can be incorporated into this routine. DO NOT USE DVD’S or TELEVISION to lull your child to sleep. Again, trust us this makes many more problems in the long term and can lead to some very unsettled nights. Warm baths, soft lighting, a wind down time and a bedtime story can all be very soothing.
Older Children (18 months to 2 years) need to learn to fall asleep on their own. That way if they wake up in the night they should be able to settle back to sleep without you.
If you have to go into your child’s room; keep the lights low or even switched off.
Make your visit as brief as possible. Deal with the machines / nappy / difficulty, stroke your child’s hair to soothe them and get out as quickly as you can with minimal fuss.
Parenting a chronically ill child is much more challenging than parenting a healthy child. Regular hospital visits, procedures, medicines and special diets don’t make for perfect child raising conditions and can interrupt children’s development. It is really important that you stay calm when managing all these issues. If you get stressed, your child gets more stressed and problems are often exacerbated. Tantrums and not doing as they are told are regular complaints. It can be tempting to shower your “poorly baby” with treats and rewards to make up for all the horrible things they have been through. Grand parents and other family members can also over indulge the “poorly child”. Small treats for undergoing painful procedures sound fine to us, but getting something every time you come for an appointment or every time you want something is not the best way to raise confident, positive children. Children like to earn rewards and respond to firm boundaries. Regular play times and praising behaviours you would like to see more of can really encourage small children. They will even jump through hoops for stickers and small treats.
Parents are the most important person in a child’s life. You brought them into the world. You know more about them than anyone else. It’s your job to keep them safe and warm. Part of looking after your child means looking after yourself. Many new parents find themselves experiencing low moods or anxiety. The risks are much higher if you have a child with a chronic health condition like short bowel. Don’t be afraid to tell people if you worry about how you are coping or it seems like too much for you to cope with. The Medical team, Psychologists and Social Workers aren’t here to judge you. We want to help you manage the situation more effectively and we might just be able to help. Getting help also doesn’t mean just being prescribed anti depressants (although these work fantastically for some people). Help can come in many forms, from having someone to discuss your concerns to more practical steps. So let someone know if you are beginning to worry!
There are many more challenges to face as a parent of a child with short bowel. It’s normal to feel that you would like to have some extra help with this massive challenge.
If you need any extra help and support to manage the condition or your child’s eating or behaviour related to the condition there are lots of services around to help you. Speak to your medical team about accessing further support.
The secret to getting it right is remembering you don’t have to be perfect just good enough!!!! Reminding yourself and praising yourself for trying is also helpful.
Parenting is one of the hardest jobs in the world and doing it well is even harder. Your child may have a difficult medical condition and this can be frightening for parents, but if you try to make your families life as regular as possible you are very likely to come through it ok and to raise a pretty nice child.