Feeding a Baby with Trisomy 13 or 18

Many newborns with Trisomy 13 or Trisomy 18 experience feeding difficulties because they lack the co-ordination to suck and swallow properly. In addition, babies may have a cleft lip or palate. These challenges can lead to problems with slow growth and low weight gain. For this reason most babies born with Edwards' or Patau's syndrome start off by being fed by nasogastric tube. For newborns, the milk through the tube may be either breastmilk or infant formula.

For babies with trisomy 13 and 18, there may be a need for a special swallow test called videofluoroscopy. This test ensures that your baby can safely feed orally without the risk of milk entering their lungs, known as aspiration. Videofluoroscopy helps assess and address any potential feeding challenges, providing crucial insights for their care and well-being.

 Further information can be found below:

Breastfeeding 

Breast milk protects a baby against certain infections, and mothers who want to breastfeed can express their breast milk for bottle or tube feeding. Many UK hospitals now have support in the neonatal unit for mothers who would like to give their baby breastmilk, whether direct or via a feeding system.

  • Kellymom is a US website with information for mothers who would like to express breastmilk to feed their baby. The sections on Breastfeeding Your Premature Infant and Down Syndrome both contain practical information on how to express and maintain your milk supply when your baby is not directly breastfeeding.

  • Tommy's has information for new parents about feeding your premature baby, which includes expressing and storing breast milk.

  • If you prefer a pump over hand expressing, you may be able to hire an electric pump for use at home. Your midwife, health visitor or a local breastfeeding supporter can give you details of pump hire services near you..

Bottle Feeding 

There are many powdered and liquid infant formulas available, and the midwife will advise on what to use and how much to give. Babies may need frequent and smaller feeds. Enlarging the hole of an ordinary teat does not solve the feeding problems, and panic and choking soon result. Babies can swallow air when using ordinary feeders and this causes wind, vomiting and colic.

The Haberman Feeder is a specialist feeder designed to help babies who have a condition that makes feeding difficult. It concentrates the baby's sucking effort directly onto the milk in the teat so that even the weakest suck gets results and gives the baby complete control. Air swallowing is reduced, and babies with feeding difficulties and/or a cleft palate can benefit significantly. The parent can help the baby by gently squeezing and releasing the teat to control the amount of milk that flows into the baby's mouth.

  • You can buy versions of the Haberman feeder in the UK from online baby stores, eBay as well as direct from the manufacturers. The two main producers are Medela (SpecialNeeds Feeder (TM)) and Athrodax (The Haberman Feeder (TM)).

  • CLAPA (The Cleft Lip & Palate Association) has an online shop for specialist feeding equipment.

Colic

Colic is painful for a baby and distressing for the family. Smaller and more frequent feeds may help, and the Haberman Feeder can reduce the amount of air swallowed during a feed. The baby should be given a thorough medical examination to eliminate the possibility of other medical conditions, and in cases of severe colic, anti-gas medication may be prescribed.

NHS Choices has more information on colic.

Tube Feeding

Babies unable to feed orally or demanding one or two hourly feeds may need tube feeding, even temporarily, to gain weight and prevent the parents becoming too exhausted to cope.

The three types of tube feeding are:

  • OG - tube in the mouth and down the oesophagus

  • NG - tube in the nose and down the oesophagus

  • Gastrostomy - tube inserted in a small opening through the skin directly into the stomach

A feeding assessment will be necessary in order to decide which form of feeding is best for your baby. 

At first in hospital it is likely the nursing staff will manage the tube feeding until you feel confident to do so.  You will receive lots of training and support with this and will not be asked to go home before you are fully confident with this.

Most families find they adapt to tube feeding more easily than they anticipated. 

Longer term assessment:

Feeding evaluation will continue over time.  Some babies may move from other forms of feeding on to Tube Feeding.  Some babies may start with Tube Feeding but be able to move on to oral feeding.  Some babies will use mixed feeding, where they take some food orally and some through a tube method.  Some babies will move from one form of Tube Feeding to another if it is judged to be more effective.

In the longer term decisions about feeding will be made based on your child's needs, weight, suitability for surgery etcetera. 

Helpful resources

Tube Feeding of Solid Foods

As a child grows their nutritional needs may change. Some older children are fed blended solid food through their feeding tube. 
Complex Child magazine has information on tube feeding, including the experiences of families trying a "blended diet". 

Cleft Lip and Palate 

Between 10-20% of babies with Trisomy 18 will be born with a cleft lip, or palate, or both.

Around 60% of babies with Trisomy 13 will be born with a cleft lip, or palate, or both. 

Babies with a cleft palate are unable to make a seal between the mouth and the nipple/bottle teat, and cannot suck effectively. Your midwife, infant feeding specialist midwife or cleft team feeding adviser should be able to support you. If direct breast or bottle feeding is not possible, you should be shown other methods.

CLAPA offers antenatal and postnatal support for all aspects of caring for a baby with a cleft lip or palate. Their feeding advice is helpful, as is their very comprehensive online dvd Easing the First Few Hours.