A special need for nourishing advice

On January 29th, 2010, Jason Behan was born four months prematurely. His unexpected arrival meant the tiny boy weighed in at just 1lb 4oz and, because of his size, remained in hospital for the first eight months of his life as he needed extra nutritional care in order to help him reach a stable weight – he had also just been diagnosed with cerebral palsy.

When his parents, Lyndsey and Gareth, finally took him home to their farm in Portlaoise, not only did they have to deal with his condition unaided by medical staff, but they also had the very vital task of ensuring their son consumed enough calories to help him to gain some of the weight he needed to survive.

This week is Nourish Children Week and the Irish Nutrition and Dietetic Institute (INDI) wants to highlight how a good diet can aid a child's development. Youngsters with special needs often require extra nutrition so it is vital they get specialist advice to ensure their diet covers everything they need.

Lost without dietitian
Jason's mum, Lyndsey, says she would be lost without her dietitian who is on hand whenever she needs guidance and reassurance that she is doing the best she can for her son. "Jason was so tiny when he was born and was unable to suck from a bottle," recalls Lyndsey. "He stayed in hospital for eight months and then we had to learn how to feed him through a nasal tube for the first year he was at home.

“He still isn’t a great eater and has trouble sucking from a bottle so we have to give him a lot of highly calorific foods such as special milk with extra calories in it and plenty of the things most of us try to steer clear of like double cream, sugar and butter.

“He is still really small for his birth age and is only on the 2nd percentile for his weight and under the 4th percentile for height. But although he is technically three years old, I refer to him as being a year younger as he was born so prematurely and hasn’t managed to catch up yet.”

Jason has just learned how to sit and stand up and has also begun to crawl, so although he still doesn’t eat very well, Lyndsey has to ensure he is getting enough calories to replace those he is losing through his increased daily movement.

"As Jason has cerebral palsy, all his development is delayed and he has only recently started moving about," she says. "But he's very active and burns calories really quickly so it's very hard to know if he is getting enough nutrition. But Niamh, my dietitian, has reassured me that although he is still very small, his weight is going in the right direction so I just need to continue with the feeding pattern we have now.

Taking advice
"He has a check-up every six months but Niamh contacts me in between to check how he is doing and is always available if I need advice.

“Some people find it really difficult to take advice on how to feed their child because it feels like someone is telling you that you aren’t doing your job as a mother properly, but the dietitians are only doing their job too and particularly for a child with special needs, it is really important to take all the advice you can get.”

Daniel Airey from Dublin is 15 years old. He was also born with cerebral palsy and was three months premature. But although he is confined to a wheelchair, he doesn’t have a weight problem as his mother, Kathleen, ensured that his diet was home-cooked and healthy right from the word go.

“When Daniel was born we were told that he wasn’t going to make it as the prognosis was looking very bad,” she recalls. “His birth weight was only 3lbs so he was very underdeveloped and had to be resuscitated – but he was a fighter from the beginning and although he had no suck reflex, he was fed through a tube with milk which I expressed every day.

“After a while he went on to a special powdered milk and when he was around six months old, he progressed to solids like any other baby. As I did when my daughter Grace [now 18] was a baby, I made sure all the food Daniel ate was home-made.

“I started him off on pureed vegetables and fruit and, within time, he progressed to proper meals. He had a very shaky arrival into the world but nutritionally, he seemed to be doing just fine.”

Catch-up
Although Daniel had plenty of developmental problems over the years, he soon began to catch up with his peers and is now studying for his Junior Cert and hopes to be a sports journalist in the future. His mother's insistence on healthy eating has helped him to develop a keen interest in fitness and sport in general.

“Daniel was delayed in lots of areas until he was about five, but then he started to gain weight and developed both mentally and physically,” says Kathleen.

“Today he is really healthy and although his legs are very weak and he can’t walk, he doesn’t have any weight issues at all. I have always told him how important it is to remain healthy because if he gets overweight, his independence would be severely reduced as his upper body wouldn’t be able to support him getting in and out of the chair.

“He has a fantastic diet and is really motivated to stay healthy and keep in good shape. My husband, Richard, has started taking him to the gym twice a week to work on his upper body, he also goes swimming and we have been given the loan of a special bike where he can exercise his legs, so he is doing brilliantly at the moment.

“He loves watching sport and wants to study journalism so if he remains as positive as he is, the future looks bright for him.”

Barbara Shinners is the co-chairwoman of the Disability and Mental Health Interest group of INDI. She says that achieving and maintaining a healthy diet is vital for all children but those with special needs often have extra requirements which need to be addressed.

“Good balanced nutrition is important to all children to ensure healthy growth and development,” she says. “Frequently however, children with special needs have an extra need to ensure adequate nutrition throughout their childhood.

“Depending on their diagnosis, children with a disability have had a rocky start in life which presents significant challenges to their ability to achieve sufficient nutrition for growth and weight gain.

“Their diagnosis can mean that they have very different energy needs than their siblings or peers, and feeding or weaning milestones can be missed due to surgery and medical treatment.

“These unique needs are challenging to meet with standard nutritional advice and can be difficult for parents to recognise so the input of a dietitian is crucial at this time.”