Breast Feeding a Baby with a Chromosome Defect

Feeding problems can cause slow growth and low weight gain because babies lack the co-ordination to suck and swallow properly. Breast milk protects a baby against certain infections, and mothers who want to breastfeed can express their breast milk for bottle or tube feeding. The National Childbirth Trust has available for hire electric breast machines for use at home.

Bottle Feeding

There are many powdered and liquid baby milks 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.

Bottle Feeding - The Haberman Feeder

The Haberman Feeder was invented by a mother who experienced the misery of feeding problems after her daughter was born with a rare syndrome, and was designed to help babies who have a condition that makes feeding difficult.
The Haberman Feeder 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.

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

Although nursing experience is helpful, parents without any medical knowledge can learn to tube feed at home and they quickly become the experts on tube feeding their baby. Continuous overnight feeding by mechanical pump or naso-duodenal (i.e. to beyond the stomach) tube may be tried where ordinary methods of feeding have failed. A period of time is required for evaluation before a gastrostomy is considered or where surgery is not advisable.

Tube Feeding - A Personal Account

 The following was written by a mother in her early twenties who had no previous medical experience, and whose daughter had trisomy 13 and needed to be tube fed:

'My daughter Ashlee was tube fed. My first thought was of horror, "I can't do that" but realising this was the only way l could take her home and that nervousness and hesitancy would only prolong her stay in hospital, I made myself think there was nothing to it. After midwives helped me to tube feed her and explained what to do I sailed through her other feeds until I got her home. Then came the difficulties and I discovered how to manage by experience'.

 Before each feed I washed my hands and prepared everything I needed. I turned my baby on her side to prevent her choking if she was sick, and propped her up slightly with a pillow. Putting the tube in the side of the mouth reduced retching, and to make sure the tube was in her stomach I always did a litmus test. If she became distressed when the tube went in I stroked her face to reassure her before starting the feed. An unsettled baby causes much frustration. If she didn't want her feed I removed the tube and tried again later.Tilting the stopper and pushing it gently into the syringe ensured the milk didn't gush into her stomach which would have startled her into bringing it up again.

If she strained during a feed the same thing happened, and I had to be quick and put the stopper back in the syringe to hold the milk in place before it drenched both of us.I never removed the tube while milk was being administered, but nipped it close to the mouth to suspend the milk, and repeated this procedure when she had finished feeding, always remembering the baby must not sit up when the tube is in. Eventually I was so experienced I could cuddle her as she was tube fed. The Special Care Unit gave us an emergency advice line to phone if we ever needed help or advice, and also provided tubes and mucus extractors. As my daughter grew, her feeds increased and I needed to use larger syringes'.

Problems Associated with Tube Feeding

A mucus extractor or chest physiotherapy before a feed can help a congested baby. Some medicines irritate an empty stomach, and others do not work so well when given with food. Parents should ask the pediatrician or nursing staff for advice when problems arise.

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 (See Haberman Feeder, Coping with Feeding Difficulties). 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.

Cleft Palate

Babies with a cleft palate are unable to make a seal between the mouth and the nipple/bottle teat, and cannot suck effectively. A plate can be fitted in the roof of the mouth. (Also see Haberman Feeder).

Parents can be taught to tube feed, see below for the different methods of tube feeding, and talk to your doctors about what will be best for your baby, and wait until feeding is established before you take the baby home.