Parent's Report
To Whom It May Concern:
We are writing this letter to share the struggles and experience we as a family had due to having a child that was given a g-tube in the first year of life. Our daughter, Sydney is now three years old and has struggled with feeding and eating orally since she was born.
Sydney was born with a cleft palate and required a special squeezable baby bottle to eat. We struggled with the feeding relationship and were admitted to the Hospital for Sick Kids in Toronto when Sydney was four months old for failure to thrive. We spent six longs weeks there as there was no feeding program or team to help us with our struggles. We were advised that Sydney would be best served to have a g-tube surgically inserted and we could go home and use the g-tube to supplement what she did not take orally. Only days after arriving home and using the g-tube, Sydney refused all oral feeding and our struggle only got worse. Sydney developed Gastroesophageal reflux disease (GERD). This required her to take very high doses of medication (more than double what an adult would take). We had a difficult time getting all of the calories Sydney needed into her by g-tube. She vomited daily, and her weight gain was very slow. Less than a year later, Sydney had surgery to repair her cleft palate. This only made her more defensive of her mouth and she refused to have anything go in it.
We tried to get Sydney to eat or drink, but she refused all oral feeds. We had support from an occupational therapist and speech therapist in our community, but they had no experience working with a child that was g-tube fed and one who refused to eat altogether. We were referred to Dr. Wittenberg from the Infant Psychiatry Program at Hospital for Sick Children (HSC) in Toronto. He told us about a feeding program in Austria and his attempts at getting a similar program started in Toronto. The in-patient program at HSC was still in the planning stages so we agreed to try the program as an out-patient. It was very difficult commuting back and forth to Toronto and not receiving the twenty-four hour support that the in patient program, such as the feeding program in Austria offered. Sydney made some small gains during the three week program as an out patient at HSC, but did not start eating as we had all hoped.
Dr. Wittenberg was hopeful that the in-patient program would start up at HSC, and we could bring Sydney back at that time. The research shows, the younger the better when weaning children off their g-tubes. We asked Dr. Wittenberg to refer us to the program in Austria, as Sydney would be turning three years old and the program in Toronto was still not in place. In April of 2006 we took Sydney to the children’s hospital in Graz, Austria. It was very difficult because it was so far from home and the language was different.
When we first arrived at the Children’s hospital in Graz we met a child and his father from Germany who had been through the program. The father was happy to report that his son was eating and was no longer g-tube fed. Next we met Dr. Dunitz, Dr. Sheer and the rest of the feeding program staff. We were all in agreement that we wanted to get Sydney off the g-tube as soon as possible. We agreed to cut her g-tube feeds completely during the day and give her glucose through the g-tube at night. We prepared Sydney for this reduction in calories by slowly cutting back the amount of formula she got each day. We were given a schedule of appointments with an occupational therapist, a physiotherapist, a speech therapist, a cranial sacral therapist and play picnics. They all had a different approach of how to help Sydney and all were very helpful during our stay in Graz. One of the therapists that was instrumental in helping was her speech therapist. She taught us how to use oral stimulation to help Sydney with her oral defensiveness. She showed us how to put gentle pressure of each of Sydney’s teeth using a baby wash cloth. This was a turning point for Sydney, as we used this strategy Sydney started to allow us to brush her teeth. It seemed that she was becoming less defensive orally.
It was very difficult watching Sydney grow hungrier and hungrier as the days past. It was even more difficult to watch her grow weaker and weaker, not to mention the weight loss that we worked so hard to get her to gain. We waited minute by minute, hour by hour and day by day for Sydney to eat. We did not pressure her to eat, and only provided a variety of foods for her to take each day. Sydney was not interested in putting any food in her mouth, but willingly drank a lot of water. The unfortunate part is that water has no calories so we added a mixture to the water to give her calories. Sydney is pretty smart and she detected the different flavour and refused to drink water unless it was in a bottle bought from the store. Who would have thought that a child at two and half would be so perceptive?
Dr. Dunitz encouraged us to get Sydney into a routine and to live as normal of a life as possible. So we went for walks in the morning, went to therapy appointments, participated in a play picnic before lunch, napped in the afternoon, walked in the evening and watched videos at bed time. During one of our evening walks we stopped for ice cream and walked near a stream. We're not sure if it was the ice cream or the stream that enticed Sydney to lick the ice cream, but she took many licks of ice cream that day. It was during this bedtime routine that Sydney finally started to take something else other than water orally. She refused the soup that was provided that evening as she had many nights before, but this time Dr. Dunitz came into the room and told us to just put the spoon with soup on it in her mouth. We told her we had tried this before and it failed, but Dr. Dunitz reminded us that Sydney had never been this hungry before. We were on day twelve and Sydney had not eaten anything. Amazingly Sydney liked the soup and opened her mouth for more. We don’t think we will ever forget that moment. She actually wanted to eat something. That was the beginning of her transition from g-tube to oral feeding.
Every day after that, we followed the same routine. Each night before bed Sydney ate the broth of the soup. Each day she took more and more. Some time over the previous three weeks we started to give Sydney milk through her g-tube again but only at night while she was sleeping. She became very weak and needed to have some energy during the day. It has been said that a child will not let themselves starve, but I know now that it is not true. Children who have never learned the benefits, satisfaction and pleasure of eating orally will let themselves starve. Sydney was one of these children. When they say every child is different, including their transition from the g-tube to oral feeing, they are right. Some children could have their g-tube feeds cut completely and would start to eat, and some like Sydney needed a slower, more gradual approach. It takes an experienced, intuitive doctor or therapist to know the difference.
The wonderful news is Sydney started eating soup in Graz. When we arrived home, Sydney regressed a bit while we frantically searched for a soup Sydney would eat. We found a wonderful lentil soup made by Nile Spice in the health food section of the grocery store. We add butter and baby cereal to the soup to give her more nutrients and calories. We often wonder if Sydney chose lentil soup to eat because she knows the benefits and feels good when she eats it. She is still working on taking a variety of foods, but we are very proud of the progress she has made. Sydney is also very proud and likes to tell people that she eats her soup now. She goes to daycare with other children who eat a variety of foods every day. We are hopeful that peer influence will entice her to try new things. She only likes her lentil soup right now, but I am confident with time and patience she will slowly expand her repertoire of tastes, textures and flavours.
Many people ask if we needed to leave Canada and go all the way to Austria to get Sydney to eat. The answer is yes. We could not have done it without the help and expertise of Dr. Dunitz and the staff at the hospital for Children in Graz. It was because of their many years of experience working with children similar to Sydney, that Sydney was able to transition from the g-tube to oral feeding. We were told the program there has an almost one hundred percent success rate. We also learned that g-tubes are almost never put in children with feeding problems in Germany and Austria unless it is a life threatening situation. For some children the short term benefits of a g-tube may not be worth the long term problems that arise after getting a g-tube surgically placed. Children like Sydney that struggle with feeding as an infant need support and understanding and help with the feeding process. We just hope that more professionals see the need for helping families with children who have problems feeding. Hopefully through this process the children may overcome their difficulties and discover the pleasures and benefits of eating orally.
Sincerely Tina Godsoe & Rohan Hasfal