Feeding problems for babies with Down's Syndrome

Down syndrome, Babies, Weight, Breastfeeding

Babies with Down’s Syndrome have a tendency to early feeding problems possibly as a result of poor muscle tone, and babies with a heart problem also tend to have problems as they tire easily when feeding. So babies who have a heart defect and Down’s Syndrome have two things making it harder for them and poor feeding and slow weight gain are common causes of anxiety for parents.
If you are currently struggling with feeding your baby, perhaps the following will give you some ideas and encouragement or at the very least help relieve some stress. And whether breast or bottle fed, your baby is likely to settle and feed better with a relaxed mum rather than one who is constantly worrying about weight gain, so do try to enjoy your baby and not focus all your concentration on their weight.

Weight

Make sure their weight is being plotted on a growth chart specifically for children with Down’s Syndrome. With a heart defect they are likely to be on a low centile (growth line) on the chart, but this will give a far more accurate picture than plotting them on a standard growth chart.
Don’t expect too much, all babies lose weight after birth and those with heart problems and also those with Down’s Syndrome tend to put on weight more slowly, so your baby is no different. The main thing is that their weight is monitored and that they continue to put on weight rather than losing it, even if the increase is very slow.
If your baby is prescribed diuretics (medicine to make them wee and get rid of excess fluid) this will cause initial weight loss and needs to be allowed for when monitoring weight. Diuretics can suppress appetite and sometimes even cause vomiting.
Adjust your expectations – if you are expecting your baby to take 30ml at a feed and they take 40ml you will be pleased. The other way you may be constantly disappointed.
If your baby’s weight gain is really slow you may be given an energy supplement to add to their milk. There are several different types available including Calogen, Duocal and Maxijul and you will be advised how much to use by the dietician. Supplements can be added to both formula and breast milk and may also be added to food such as yoghurts when you begin weaning.

Feeding generally

Some heart babies are very sleepy and don’t automatically cry when they are hungry, so parents have to wake them for feeds. You can try changing them, rubbing or tickling their feet or perhaps bathing them, different things work for different babies. You may also need to keep them awake by stimulating them during the feed.
Babies will often fall asleep part way through feeding without taking a full feed. This may then mean that their next feed is needed earlier, and this combined with the length of time for each feed can mean that parents seem to spend virtually all their time feeding. A little and often is much better though than trying to force them to take a whole feed that they just can’t manage.
Accept any offers you get to help with the housework and washing, as much of your time will be taken up with feeding in the first few months. And if you don’t have helpful friends and relatives on hand to help, don’t stress about a bit of dust and a few cobwebs you will soon catch up with the housework when life settles down.
If your baby is getting too tired to feed properly, the doctors may decide to feed them via a naso-gastric tube. This is a thin tube which is fed up the nose, down the throat and directly into the stomach. It is held in place with a small piece of tape on the cheek and needs to be changed every couple of days, usually from one nostril to the other. At first the nurse will put the tube in, but many parents are quite happy to learn how to do it safely themselves. When baby needs feeding, first of all you have to check the end of the tube is still in the stomach, (either by drawing up a small amount of fluid from the stomach and testing it with litmus paper or by listening with a stethoscope) and then a medium sized syringe is attached to the end of the tube and the milk is allowed to go down under gravity (the plunger is removed from the syringe and should not be used to force the milk down). Parents very quickly get the hang of tube feeding if their baby needs it.

Breastfeeding

Sucking is hard work so make it as easy as possible. If you are breast feeding, try expressing a little milk to start with to get it flowing before you latch baby on, that way they get an immediate reward for their efforts and don’t waste valuable energy stimulating milk production.
If you are having problems breastfeeding and have to feed breast milk from a bottle for a while, do keep putting the baby to the breast and try stimulating the baby’s mouth with your finger before feeds. Stroke gently around baby’s mouth and cheek, put your clean finder in their mouth to help with sucking and gently stroke downwards on their throat to encourage swallowing. Be persistent, it may take a while but eventually your baby will get the hang of feeding.