A CORK Mother is determined to see her little boy free of invasive feeding tubes by raising vital funds to secure treatment abroad.
Laura Woods from Clonakilty welcomed her son Orson in April of last year. The newborn weighed just 910 grammes after being born 14 weeks premature.
Difficulty feeding in his subsequent 10-week hospital stay led to a reduced weight of 730 grammes. The mother-of-one set up a Go Fund Me page which has already attracted enough donations to enable her and Orson to work with weaning experts in Austria. Professionals working in this area operate from a facility referred to as the No Tube Clinic which deals with feeding tube dependencies, among other related disorders.
“The first step will be to work with weaning experts from the No Tube Clinic in Austria via an online link,” she explained. “If this isn't successful we will travel to the country and have Orson participate in a programme to help gradually reduce tube feeds.” The extensive treatment would cost around €8,500 before accommodation and travel expenses.
She described how their ordeal began.
“Orson was initially tube fed from birth. Having arrived so prematurely, he hadn't yet developed the ability to suck or swallow.We had finally managed to get him to eat and he was doing really well, probably a little too well. It got to a point where he wanted to eat every hour or two. After a while, it was as if he had had enough. He used to hide his head any time he saw food coming. Trying to force feed him was extremely distressing. In the end, there was no other way but to have a tube fitted.” She said his refusal to eat could be down to a number of reasons.
“Physically there is nothing wrong with Orson's swallow. It was suspected that the discomfort of reflux may be what led him to revert. The fact that he was born prematurely could mean his oral aversion is down to a developmental delay.They say the time getting a child off a feeding tube is directly proportionate to the time he or she has spent on it. That's why it's so important that we see to the issue while Orson is still very young.” She fears that being tube fed long-term could have an effect on his social development.
“If Orson gets any hint of liquid or paste in his mouth he just gags. Even puree makes him retch The equipment we have to deal with makes getting out much harder. As a result, I haven't been able to join any mother and baby groups where Orson would have the opportunity to interact with others his age. Just like with a newborn baby we have to wake up a number of times to tend to his feeding tube. Usually, this means getting up at 2am and again at 5am or 6am.” The 33-year-old added that changing Orson's feeding tube can be distressing and time-consuming.
“All the equipment can often make you feel like more of a nurse than a parent. We just want to have a normal relationship with our baby. You get a lot of people trying to dish out advice, asking if you've tried this or that. People always mean well but of course we've tried everything.” She thanked the community for their generous donations.
“It's impossible to sum up in words just how good people have been to us. When Orson was first born his story captivated a lot of people. After seeing how sick some of the other premature babies in hospital with Orson were we count our blessings every day. His life isn't hanging in the balance and fundamentally he is a very happy baby."
Laura said that any excess funds raised from her son's Go Fund Me page will contribute to ongoing medical costs relating to his feeding tube or be donated to the Irish Neonatal Health Alliance and or the NEO Natal Care Unit at Cork University Maternity Hospital.
To donate to Orson's fund visit www.gofundme.com/orsons-tube-weaning-journey