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Coping with Feeding Difficulties

Many parts of the body do not develop properly when there is a chromosome abnormality and babies suffer from 'failure to thrive' and feeding difficulties causing slow growth and low weight gains.

Breastfeeding

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 breast feed can express their breast milk for bottle or tube feeding. The National Childbirth Trust and many hospitals have electric breast machines for use at home, available for hire.

I tried to breast feed and was told it was my fault I was not succeeding. I suffered terrible guilt because it was something I wanted to do for Hannah.’

I tried and tried to breast feed but it was too difficult, so I got hold of a National Childbirth Trust electric breast pump and fed expressed breast milk in a bottle. Joe gained weight very slowly.’

I expressed my breast milk using an NCT electric pump that I had at home and fed our daughter Heather very successfully for the eight months she lived. I felt it was worth all the effort as her weight gain was very good. At 7 months she weighed 121bs, at birth she had been just over 31bs.’

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.

Feeding was a 24hr job. Katie would suck 2oz milk in half an hour and then vomit. After sleeping for an hour she would wake hungry and so on.’

David and I fed Jonathan in shifts during the night. When he woke he was given as much milk as possible. This way we managed to sleep for about 4 or 5 hours each without worrying about him. We soon learned when to sleep and when it was our turn to be awake!’

Melissa was fed by breast, tube and bottle for the first week. Then just bottle fed, when we fought to get every possible drop inside her.’

Bottle feeding - The Haberman Feeder

The Haberman Feeder

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.

(Contact SOFT for a leaflet about the Haberman Feeder).

Because my daughter had a cleft palate, l had to feed every hour and she gained weight very slowly. After eight weeks she started to lose weight and by three months had dropped to 5lbs 12oz. After using the Haberman Feeder she put on 1lb in two weeks and sucked 5oz in an hour. Her weight increased steadily from then on.’

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).

Danny had a cleft lip and palate and was NG fed until his lip was repaired at 5 months. Some friends even learned how to feed him for me. Before tube feeding we encouraged him to take as much milk as he could from a bottle with enlarged hole in the teat. After his lip repair Danny drank entirely from the bottle.’

Ellis' heart was checked and rechecked by our specialist who gave the okay for his cleft lip operation. He looked so small but he was marvellous - he had a proper little button nose and a proper little mouth - how I cried! There was my proper little boy!’

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.
The NG Tube

The NG Tube

THE POSITION OF AN N.G. TUBE IN THE STOMACH

A lot of Guy's progress was because I was taught in hospital how to tube feed so he had milk even when he couldn't suck.’

Katy took her bottle within a week of her colostomy and continued to do so fully for l2 weeks when she went on part tube/part oral feeding. Now she is 100% naso-gastric fed. I was not upset by this as we had been warned it could happen and she conserves her little energy for surviving.’

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 paediatrician 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).

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.

Jonathan had chronic colic and at 8 weeks old he was prescribed a medicine not normally given to babies under 6 months. Merbentyl relaxed his stomach and mildly sedated him. I had to hold him over my shoulder for at least 20 minutes after each dose to prevent any possibility of choking. We used the doses at night to get some sleep. The colic stopped at 10 months old.’

Constipation

Babies with trisomy 13 and 18 may be prone to constipation and discomfort can be relieved by diet, fluids or medication depending on the cause and severity. Midwives may suggest adding a little (brown) sugar to the feed as a temporary measure for the very young baby, but suppositories may be needed for chronic constipation. Always seek the advice of the baby's doctor or health visitor.

Our son has trisomy18 and suffers from chronic constipation. Sometimes the motion would be rock hard and not emerge for 4 or 5 days. Although suppositories and laxatives would work in emergencies our pediatrician preferred a gentler method. He now has paediatric Dioctyl every day. This softens the motion and he manages a bowel movement, on his potty, at least every other day.’

Gastro-oesophageal reflux - vomiting of feeds

Reflux vomiting may be caused by a defect in the working of the stomach that allows fluids to run back up into the oesophagus of a baby and can cause a burning feeling as in severe heartburn. When the baby has a chromosome disorder such as trisomy 13 or 18, chronic GO reflux can result in failure to thrive, pneumonia and other complications.

Refluxing may be helped by:

  • Placing the baby on a level surface with the head raised slightly at an angle of about 30%.
  • Giving smaller and more frequent feeds.
  • Thickening agents such as Nestargel and Carobel.

Nicola was vomiting badly at least twice a week and, although she has medicine for her sickness, we still want to control it completely. The SOFT information on refluxing has been very helpful and we are going to discuss it with our paediatrician.’

Feeding was a 24 hour job. Beth would suck 20mls of milk, then fall asleep and wake hungry a couple of hours later. She would vomit several of her feeds, daily, however carefully I fed and winded her. I only managed because I had a very supportive husband who took over when I was too exhausted to wake up at night.’

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