When his daughter was born without both arms, Colin Power vowed to think and act positively around his brown eyed girl
It was a shock when Erin was born as you can imagine. It is still a shock because every time I see her she surprises me.
She does not let anybody hold her back. She is a very determined little individual. She is bright and intelligent.
She has a tendency to try to win over situations with her big brown eyes, but they don’t always work with me.
From the get-go we decided to think and act positively around Erin and always let her know that we are there for her, that she can achieve most things in life that she wants to achieve.
When she was born we were told it was amniotic band syndrome that caused Erin’s limb deficiency. I had never heard of it before.
The amniotic membrane that forms around the foetus when it is developing can sometimes cut off circulation if a limb is sticking through it. It is a bit like putting a finger through a bubble.
Hers is an extreme case. While amniotic band syndrome might lead to the loss of a limb or half a limb, Erin’s case is unique in that she was born without both arms.
We are members of an association for children who are born with upper limb deficiency called Reach which is based in the UK, but has an Irish branch.
Positive feedback
We got to meet other children and the parents of children with similar circumstances, and were encouraged by the positive feedback we got from them. Erin was prescribed prosthetics but they served little purpose and she lost interest in them after a very short time.
We were given the option to have her humerus lengthened and this procedure could make it easier for Erin to use a functioning prosthetic.
Her mother and I couldn’t make that decision because it would put her through a lot of pain and discomfort.
We decided when Erin is old enough that she can decide if she wants it or not.
From a prosthetic point of view, it is not feasible to prescribe Erin something that would cost as much as it would now because she is constantly growing.
Technology is marvellous. There are numerous devices out there and batteries are getting smaller. One day we hope she will have a functioning prosthetic which will help her, but she is pretty independent as she is and does everything her peers do.
Independence
The things that we use our hands for, she uses her feet and she’s very good at it. She is going to have to get more independent as she gets older. I wouldn’t force anything on her. If she doesn’t like something, she lets us know straight away.
Erin went through an assessment at the Central Rehabilitation Clinic (CRC) and she was found to be above average intelligence. She doesn’t find it complicated with mathematics, reading or writing or any of that stuff. We take her to Cappagh Hospital every six months or so for a check-up.
Young age
At Erin’s young age nothing is clear-cut. Appointments are basically follow-up appointments. It is not until the doctors see how she progresses and grows and then we will be able to get a full picture.
From a prosthetic point of view, it would not be satisfactory if you went ahead with an artificial limb and she didn’t like it. You have to hold back at this early age.
Hopefully in years to come there will be something available to make life easier for her. There is a lot of technology out there.
You get into the services that are provided that are hard to get into, but when you do get into them, they are very helpful.
The only time of year she does not like is September because a lot of new children enter the school and they stare at her and remarks can be passed. It can be annoying.
I say to parents in a similar situation to us, always think positively. If you start letting negative thoughts get on top of you, they’ll finish you off. You won’t be able to see the wood from the trees, and always listen to specialists.
About Cappagh National Orthopaedic Hospital
Erin Power is treated at the Cappagh National Orthopaedic Hospital (CNOH). Based in Finglas, the hospital treats more than 2,500 inpatients, 9,000 day cases and 11,000 outpatients every year. The Cappagh Hospital Foundation (CHF) is the fundraising arm of CNOH. CHF depends on the support of volunteers and donors. CHF has set fundraising targets for the next three years to allow them to deliver on a number of much needed improvements in the hospital.
Erin's story: 'Some day I would really like to climb a tree'
My name is Erin. I’m nine years old. I go to Gaelscoil Ui Earcain in Finglas. I have a brother called Finn and a sister called Sadhbh. I’m the oldest in my family.
I like a lot of science subjects especially when we do experiments. I did an experiment on my own which was a baking soda volcano. We used clay rather than papier maché. My Dad is brushing up on his Irish and I’m helping him out.
I like to watch television. My favourite book has to be the one that my Nana got for my birthday, The Twits.
I have a whole collection of Harry Potter DVDs. I haven’t watched all of them, but my favourite one is Harry Potter and the Prisoner of Azkaban.
I did Irish dancing and hip hop until I got left leg fever. I started dancing when I went to school. I made my communion last April. The party was real good.
I really like animals. I’d like to either be a zookeeper, run a pet shop or be a vet.
I write with my foot. I have a special chair that goes up and down once you press a button. It takes me to about the height of the table so I’m able to write and do other stuff like that.
I have prostheses but I never really use them because they aren’t comfortable on me. They didn’t do anything.
We are doing little football and stuff in school. I’m usually the goalkeeper because I was doing sports day in school today and I was the goalkeeper.
I go to Cappagh Hospital every six months and they ask me how I’m getting on. I tell them that I’ve been getting on good.
There was two boys in the supermarket walking by and they said “Hey, look at her, she has no arms.” That made me feel sad.
Some day I would really like to climb a tree.
