HEF watch: A parent’s

compiled by Jennie Winnard HEF Dietitian

A parent’s perspective

Michelle and Nigel Gould are the parents of two daughters; Bethany who is completely normal and Robyn who has cerebral palsy which leads her to be gastrostomy fed. Robyn, now three, is nil by mouth and has been since birth. She has just started nursery and Michelle writes the following about her journey with artificial feeding. an inability to feed normally because decided that it was in Robyn's best interwhen I started to feed her, I realised that if we didn't feed her like this (i.e. gastrostomy feeding), then she wouldn't be her. This made me pull myself together and realise that if other people had a problem with gastrostomy feeding then it was their problem, not ours.

“…she won't ever have

the special things such

Immediately after her birth, Robyn displayed symptoms of cerebral palsy and neat and tidy and the parent reassured us that it wasn't a bad operation, so we or Christmas lunch…” as birthday cakes, treats she couldn't suck or swallow. She was est to go ahead. When Robyn is ill we have to go through fed through an orogastric tube from the After the long and complicated opa process of finding a way to get milk into beginning. eration, Robyn was fitted with her gasher as she often doesn't tolerate it. This is

Due to the fact that Robyn was quite trostomy. We had to learn how to feed quite normal, as when children are ill, the ill from birth, we didn't have the chance her before being able to bring her home. first thing they go off is their food! Also we to feed her. Over a short period of time, Everything was so unnatural. There was don't have any moaning about how yucky the orogastric tube was changed to a nastill no bonding, it was just: attach a tube, medicine tastes - just down the tube it sogastric (NG) tube and while this was pour milk into a syringe, flush with water goes (this is a real plus!). happening, Robyn was in an incubator on and then detach the tube. A downside to Robyn being PEG fed is HDU. With no formal diagnosis, we had that she won't ever have the special things no reason to think that the situation would be anything other than temporary. Nor“I didn't feel like such as birthday cakes, treats or Christmas lunch, but this is due to Robyn's condition. mally mothers and babies bond naturally through feeding and it was heartbreaking a mother; I felt like We try to encourage her to know all about food, for example she loves to go shopthat Robyn could not feed naturally. This, along with her condition, meant that there a nurse.” ping for bread with her dad and she loves to have a setting at the table with us when was absolutely no normal mother and we have a meal. Robyn enjoys doing these baby bonding between us. After three and a half months of watching Robyn struggle, fail to put on weight or develop in any way, the doctors sugJust like any normal child, Robyn would fall asleep after her feed which meant no cuddling either. By the time she things, but there is deep sorrow that she will never be able to enjoy them for real. We also know that without the gastrostomy, she wouldn't look as healthy or be as gested that Robyn have a fundoplication woke up it was time for another feed, so developed mentally and physically. and a gastrostomy. there was little physical contact. I didn't Thankfully someone invented a way Nigel and I had mixed feelings, firstly this feel like a mother; I felt like a nurse. to feed other than naturally and because was a big operation, secondly we were Then we eventually got Robyn home of this Robyn is doing all of the things worried about what it would look like and which was amazing. After a little while she wasn't supposed to be able to do. If thirdly we had to come to the realisation we got into a routine and feeding beRobyn wasn't fed as she is she wouldn't that our daughter may never be normal came easier. I will never forget the first be with us today. and eat like a normal child. We were time that I had to feed Robyn in public, I It helps us that the people involved shown what it looked like on another was so nervous. Was everyone watching (the dietitians, doctors and nurses) listen 58728.16 Nestle HEF Dec 190x63:58728.16 Nestle HEF Dec 190x63 4/11/09 13:09 Page 1 child and chatted to the parent to ask me? What were they thinking? Did they to us as parents and that we all work tohow the operation went. It all looked so think it was my fault? It was terrifying, but gether to help Robyn develop further.

With continual help from Peptamen ® Junior,

I will play on my new swing

Chloe required an intestinal transplant. Consequently she was started on Peptamen ® Junior because of its ideal formulation of 100% hydrolysed whey protein, MCT content and low osmolarity. She is now gaining weight, becoming stronger and can’t wait to go home and fly high on her new swing.

For further information call the Nestlé HealthCare Nutrition Customer Careline on 020 8667 5130 or visit nestlenutrition.co.uk/healthcare Nestlé HealthCare Nutrition produces a range of food and drinks for special medical purposes for use under medical supervision for patients requiring either an oral nutritional supplement or a sole source of nutrition. The account in this advertisement is fictional but based on accounts from real patients who have been malnourished. Any resemblance to actual persons or situations is entirely coincidental.