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.
Breast Feeding
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 has available for hire electric breast machines for use at home.
"I tried to breastfeed and was told it was my fault I was not succeeding, and suffered terrible guilt because it was something I wanted to do for Hannah. "
"I tried and tried to breastfeed but it was too difficult, so I got hold of a National Childbirth Trust electric breastpump and fed expressed breastmilk in a bottle. Joe gained weight very slowly."
"I expressed my breastmilk 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 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 Habermann 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.
"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%nasal 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.
Although nursing experience is helpful, parents relatives and friends caring for a baby at home can learn how to tube feed. To give parents a rest, a special overnight feeding pump can allow the baby to feed throughout the night.
Tube Feeding - A Persona 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 frustrahon. 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.