A project at Crumlin hospital is helping to get children off tubes and eating for themselves
FEEDING IS one of the strongest instincts of the newborn baby and the desire to feed one’s newborn baby is one of the strongest instincts of a new mother. When feeding problems arise, it is essential that appropriate support and advice is quickly available.
Oral feeding can be a particularly problem for babies with congenital heart disease (CHD) because of the energy needed to feed successfully.
Senior cardiac speech and language therapist at Our Lady’s Children’s Hospital in Crumlin (OLCHC), Celia Butler, says that while babies make it look very easy, feeding is actually hard work.
“Typical feeding problems experienced by babies with CHD include the sleepy baby who won’t wake for feeds or who falls asleep before the feed is finished, weak sucking, lack of interest in feeding, and swallowing problems where milk goes the wrong way and enters the wind pipe.”
Many children with CHD will experience tube feeding at some point in their lives. When this happens, Butler has a major role to play in order to ensure the children develop good oral skills even though they are not feeding orally. This is important not only for feeding, but for speech development.
“In the past, a common complication of tube feeding was that the baby lost his/her feeding skills – the ‘if you don’t use it, you lose it’ theory,” she says. “Even worse, many children developed an oral aversion because of the lack of pleasurable oral experiences and also due to the many painful or frightening oral experiences they had [suctioning, taping, etc], children developed a fear of anything going into their mouth. This meant that often, after successful surgery, establishing oral feeding was next to impossible as the child had no experience of what to do.”
For some babies, the transition is even more challenging when there is an associated condition, such as Down syndrome or DiGeorge. Tube feeding can also prevent the baby from experiencing thirst and hunger, and a significant number of children develop “tube dependency” – they continue to be dependent on tube feeding in the absence of a medical cause which is extremely distressing for their families.
A project developed in the cardiac department at Crumlin is proving very successful in helping children to get rid of their tubes for good. The Anyone Can Eat programme, known informally as the Messy Picnic Clinic, is the first of its kind in Ireland.
“It’s a three-week, inpatient, intensive tube-weaning programme which aims to develop full oral feeding by the end of the course. Children and their parents attend daily allied health therapies and a ‘messy picnic’ play group. At the ‘messy picnic’, children learn to experience and enjoy food in an enjoyable setting with their peers,” says Butler. The programme was developed by Celia and senior cardiac dietitian Carina Kelleher, who both work closely with the cardiac psychology team.
The “messy picnic” group is a fun-filled hour of touching, squeezing, smearing, licking and, hopefully, tasting a range of foods such as yoghurt, jelly, chocolate spread and a lot more. The old rule of “don’t play with your food” definitely does not apply here.
In order for the programme to work, the child must be hungry enough to eat so their tube feeds are reduced, something not all doctors would agree with, as the child’s weight tends to plummet quickly, but Butler says their weight usually stabilises within two to three months after weaning off the tube.
“We give them whatever they will eat. One little girl went home on chocolate buttons but it didn’t matter because once she got home, her parents could start to give her a wider range of foods and we follow up on all the children who go through the programme. They usually end up eating a range of purees and solids and drinking milk, juice and water.”
To date, 18 children with a range of medical diagnoses have attended the Anyone Can Eat programme, including some non-cardiac children, and are now feeding orally. The average age of the children is 10-12 months, although some are as old as 27 months.
“Families looking for this kind of programme prior to its establishment in OLCHC had to travel to Europe. In addition to the benefit to the children and their families, the programme has major cost savings for the health service. It costs up to €20,000 to send a child to Austria for a similar three-week programme. The cost of tube feeding a child for a year is approximately €10,000-€12,000,” Butler says.
Voluntary organisation Heart Children Ireland has been funding Butler’s post since she started in April 2007 and has extended funding to December 2010. Crumlin hospital has applied to the HSE for continued funding, but the future of the post is uncertain after that date.
Chief executive of Heart Children Ireland, Margaret Rogers says the cardiac speech and language therapist post is a vital post and they don’t want to lose it. “These are very vulnerable children who just want a chance to lead healthy active lives. Down the line, it will save the HSE a fortune, but we have huge concerns about whether the HSE will take over its funding,” she adds.
CHD IN IRELAND
About one in 100 babies born in Ireland every year is born with a heart problem, but fortunately the outlook for these children is dramatically better than it was 20 or 30 years ago.
While half of these babies will require surgery either in the newborn period or during infancy, many conditions including holes in the heart can now be repaired through keyhole surgery requiring only an overnight stay in hospital.
A congenital cardiovascular defect occurs when the heart or blood vessels near the heart do not develop normally before birth.
For details, see heartchildren.ie
