Caring For Special Babies & Children
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)

Feeding and Digestion

Why Our Baby? FEEDING AND DIGESTION

Like other babies, some Trisomy babies will breastfeed and some won’t.  Equally, some will bottle feed, but some won’t. 

For those who do feed, because of their floppy/hypotonic airway or poor coordination they may have to work much harder and slower at doing so and they may be more susceptible to aspiration.  Aspiration means that they might be at risk of food or liquid entering their lungs by accident, which can lead to pneumonia.  In addition, some children with heart issues may tire very quickly during feeds and not get enough feed.  As a result they may not get adequate nutrition and calories.  Support will be provided to you and your baby by a speech and language therapist, who will assess your baby’s swallow to ensure they are swallowing safely and to support you on alignment and positioning of your baby during breast/bottle/tube feeding.  A dietician will also advise you on the quantity of feed, as well as the calories and nutrients that they require.

Babies born with a cleft palate would have great difficulty feeding using a standard bottle or breast feeding as they cannot create the suction required to draw the milk out of the teat or nipple. There are special bottles designed to help babies with cleft palate to feed, which may work for some babies, but many will require tube feeding. Even after repair surgery, some babies may still need the aid of a special bottle or remain dependent on tube feeding.

If you want to breastfeed but your baby is unable to do so, you can express milk, which can be fed to your baby by bottle or through a feeding tube. All hospitals will have a lactation consultant who will support you on this journey.  It may also be possible to access a hospital grade feeding pump on your child’s medical card to use at home, which will make the experience much more manageable.  Breast pump car adapters are also available, to allow you to express while driving to/from your child’s appointments.

If your baby is well enough, you and your partner can practise skin-to-skin contact with them while they are tube/breast/bottle feeding. Skin-to-skin contact has many benefits for you and your baby, and will help you to feel closer to them.  Some parents also like to babywear, which can also help you to feel closer to your baby. Baby wearing advice and support can be accessed through the breastfeeding specialist in your hospital, or through Baby wearing Ireland.

Tube Feeding

If your baby is unable to breastfeed or bottle feed, they may be tube fed by passing a tube through the mouth (Oral-Gastric) or nose (Nasal-Gastric) and into the stomach by a Percutaneous Endoscopic Gastrostomy tube (PEG). A PEG tube may in some cases be replaced by a Low Profile Gastric tube (MIC-KEY button).  Some babies might “combination feed”. That is, breast/bottle feed combined with tube feeding.  This is often referred to as “topping up”.  If the speech and language therapist deems it safe to do so, breast and bottle feeding are hugely beneficial.  Even if your baby is only able to manage a minimal amount of milk orally, oral feeding has developmental and attachment benefits for both baby and parent(s).  Parents with no special medical experience will be supported by a speech and language therapist to learn the correct procedure to tube feed their baby.  Tube feeding provides babies with all the necessary fluid and nutrients they require.  While this can be daunting and scary, it’s important to remember why you are using a tube: it is simply supporting your baby while they strengthen their airway and learn to swallow safely.  It is a tool to ensure your baby is getting all the nutrients and calories they require to develop and remain healthy. 

Tube feeding may be temporary, or it may be long-term.  Many babies will go on to bottle feed and/or spoon feed.  But for some babies, they may continue to require tube feeding long-term. 

As your baby grows, they may learn to swallow fluids and solids.  Some babies will learn to swallow solid foods, but will continue to require a tube for their liquids.  Each baby and child is unique – it is important to go with your little one’s ability, in conjunction with your speech and language therapist. 

Some Trisomy babies may need small, but frequent feeds.  However, it’s important that your baby gets the correct amount of calories for their age and weight.  Some babies may not tolerate certain formulae.  In this situation, if you do not have access to breastmilk, you should consider changing to a different brand or a soya-based formula.  If your baby is not gaining adequate weight, the paediatrician or dietician at your hospital will be able to assist you.  A high calorie infant food may be recommended. 

Reflux

Reflux is when food is regurgitated up the oesophagus and the back of the throat.  Many babies, including Trisomy babies, have a problem with this.

In some situations, babies will expel the contents as a vomit through the mouth or nose. But for other babies there are no outward symptoms.  That is, the regurgitated stomach contents fall back into the stomach, rather than out the mouth – making it much more difficult to detect.  This type of reflux is termed “silent” reflux. 

Reflux, be it silent or otherwise, can occasionally cause stridor (noisy breathing that may be high-pitched and audible when your baby inhales and/or exhales) or apnoea (pauses in breathing).  The latter causes challenges for many Trisomy babies.  It is therefore important to access advice and support from your baby’s dietician regarding reflux.  They may suggest adding a thickener to your baby’s food, to stop it regurgitating, as well as medication to reduce/neutralise the production of stomach acid.  It is not uncommon for Trisomy children to be prescribed more than one medication for reflux, which can give them great relief from it. 

Some other challenges caused by reflux include coughing, gagging, nasal congestion, recurrent respiratory conditions and/or ear infections, difficulty breathing, difficulty feeding and “failure to thrive” (this will be diagnosed by your child’s doctor, if your baby isn’t gaining weight or growing at the expected rate for their age). 

What to do if I suspect my baby has reflux?

Firstly, make immediate contact with your baby’s paediatrician/dietician, who can assist with the diagnosis, and advise you regarding food thickeners and medication.

Reflux can occur when a baby/child’s tummy is empty or full.  Therefore, it is important to ensure that you follow your baby’s feeding cues/routine to make certain they are not allowed to get over-hungry or over-full.  Eating smaller, more frequent meals throughout the day might be necessary, in order to avoid being too empty or too full.  In some situations you might be advised to feed your baby continuously using a feeding pump.  In consultation with your dietician or paediatrician, it is important that you listen for your baby’s cues. In some situations, babies are not happy to feed continuously, and prefer to feed at intervals (known as “bolus” feeding).  Always listen to your baby.

Because reflux more often occurs after meals, it is important that you don’t put your baby/child to bed immediately after feeding. Instead, burp them and wait 30 minutes before laying them down for a nap. This will help make sure their system has digested the feed.

In addition, placing your baby on a level surface with their head raised slightly at an angle of about 30º, can also be helpful.  Simply placing a towel under their mattress can help achieve this angle.

In some situations, if the reflux is very severe, your paediatrician may recommend surgery.

Aspiration of Food

Aspiration is when some of the baby’s feed trickles into the lungs. This can occur due to poor muscle coordination or tone.  It can be the cause of chest infections and other complications in Trisomy children.

Colic

Many babies have colic, which is a severe pain in the tummy causing the baby to scream and draw up their knees.  Some parents find that a change of infant milk formula, a soya formula or a different type of bottle or teat helps. If your baby is uncomfortable with colic, your doctor may prescribe medication.

Equally, some babies suffer from gas, which can be equally upsetting for both a small baby and an older non-verbal child, who does not have the capacity to name their pain.  If you suspect your baby has gas, tap their tummy and their bottom, to assist them to pass the gas.  It might be helpful to sit them upright.

Constipation

Many Trisomy babies can be uncomfortable with constipation.  Relief of this discomfort can be helped by one, or a combination of the following:

  • Diet/roughage to encourage the formation of a soft stool.
  • Extra fluids.
  • Medication such as laxatives, suppositories, or a stool softener, and
  • Exercises/massage to encourage your baby to have a bowel motion and to improve the tone of the muscles involved.

In some cases your child might be taking medication that is contributing to constipation.  It is always worth reviewing your child’s medications with their paediatrician to assess (i) whether or not they are taking a medication that causes constipation, and (ii) if there are other options.