SUE-ELLEN’S STORY
I was 30 weeks pregnant – hurrah! 1 week further on than I was with my first born Robert who was 11 weeks premature - he’s perfectly healthy and a bouncing 3 ½ year old now! But, I’d put the scud on myself, my waters broke and I had to go into hospital, Jodie was born by vacuum extraction at 30 weeks and 5 days on 30th August 2003 weighing in at 3Ib 2oz. She was breathing on her own but just needed a little help - she had CPAP (oxygen prongs) up her nose for about 12 hours overnight and in the coming days had a routine brain scan which showed no abnormalities. Jodie was in Intensive Care in the Royal Victoria Hospital, Belfast for 5 days and was then moved to Special Care for the remainder of the 4 weeks she spent there.
Jodie was a very “unsettled” baby. She was very difficult to feed, always thrusting backwards and never slept well at all. We still attended the Baby Clinic at the Royal when Jodie was discharged from hospital for routine checkups. However, at the first clinic the Doctor mentioned a squint in her right eye. He also commented on her clenched fists and arms. On that visit, she was due a feed and a sleep so my first thoughts were that she was just agitated – she was screaming her head off but he asked to see her again in 3 weeks time (which I knew from experience was a short time between appointments because Robert, my first born, who was premature had about 2 months between each appointment).
I brought Jodie back to the clinic 3 weeks later and her form was better, she wasn’t as tight fisted and so she was to be seen again in another couple of months.
By the time the next appointment came around, Jodie was about 8 months old (corrected age would have been five months, because of her prematurity) we seen a doctor who I didn’t find very pleasant. He asked if I had any concerns to which I replied, yes “she isn’t sitting up yet”. Now I know that all babies do things at different ages but I was going roughly on the timescales that Robert did things especially because they were both as premature as each other. The doctor examined her, meanwhile I had been saying that she couldn’t really sit in her baby walker. He looked at me and said that her lower back muscles haven’t really developed yet – keep her out of buggies and on the floor! I was absolutely livid at this comment, it was as if he’d just said I’d kept her in the walker and buggies all day! I quickly retaliated by saying that she wasn’t in a buggy all day, she spent a lot of time on the floor. I felt like he was saying it was my fault she wasn’t sitting up yet! He said that he’d see her again in 8 weeks time and if she still wasn’t sitting he’d refer her to Physio.
I was not happy after this appointment at all. I came straight home and phoned my Health Visitor to tell her all about what had happened. I wanted some help NOW, I didn’t want to have to wait for another eight weeks and then god knows how much longer once I’d been referred to Physio. Jodie wasn’t even able to hold her own head up and I was very concerned. My health visitor said she would contact our Community Doctor and see if Jodie could be seen. I got a phone call a few days later from her to say that she had arranged for a Physiotherapist from Whiteabbey to come and see Jodie at home.
The Physio came to see Jodie about 2 weeks before the next appointment at the Royal. She couldn’t really comment on anything but would continue coming out every week anyway.
When we got to the Royal we were seen by a lovely Paediatrician. We went over everything with him, my mum had attended this appointment with me which I was glad of. He did a few little tasks with Jodie, ie picking up raisins, she just swiped at them and knocked them off the table, she didn’t use her finger and thumb to try and lift them as would have been expected. He said that he would like to refer Jodie to the Consultant Paediatrician for my area Dr Allison Livingstone for further investigation. At that stage, my mum said to him that she thought that I thought that Jodie had Cerebral Palsy. He said that it was probable and that he would let Allison Livingstone know of my thoughts on the situation. I sort of had an idea because my cousin Marc has Cerebral Palsy and I always remember my mum saying that she minded him when he was a baby and couldn’t get his fists open to wash his hands and it wasn’t long after that that he was diagnosed.
The appointment was over. I couldn’t speak, I just walked out of the hospital and over to the car park with tears rolling down my face. I phoned my husband Robert to explain what had happened. I don’t think we really knew what to do. It was only about 6 weeks before I got an appointment with Allison Livingstone. It was an appointment to attend the Child Development Centre in Antrim. Here we would spend the morning and be seen by about 5 different specialists – a Physiotherapist, and Occupational Therapist, a Speech and Language Therapist, a Dentist and finally the Consultant.
Through the morning, Jodie was put through various activities. Eventually after the 2 hours session we saw the Consultant. Jodie was diagnosed with Cerebral Palsy and Developmental Delay. What could we do? I cried as she was telling us but deep down, I already knew anyway. Jodie was my little girl – the first thing I had said when she was born was “IT’S A GIRL!” I just asked lots of questions about everything that would be done from here on in, now I just wanted information.
It was an awful afternoon. Robert dropped me off at my Granny’s house and he took Jodie for a drive to his work to let them know he was taking a few days off. When I went inside my Granny and Mum were in the kitchen. I couldn’t even look at them. I just said “She has Cerebral Palsy” I broke down with my head between my knees and sobbed my heart out on my Granny’s Kitchen Chair. When I got myself together I was able to explain to them what I’d been told, which to be honest wasn’t really a lot. I just knew that it was a disorder of the muscles resulting from brain damage but as to what she’d be able to do was very vague. Everything was just “time will tell”. That was the worst bit, not knowing what was ahead of you.
Within 6 months of Jodie could hold her head and was starting to talk and correspond much better. She had a CT scan of her brain which didn’t really show anything. We are still on a waiting list for an MRI Scan which can see the brain in much more detail just to see the extent of the damage, but we’ve come to the conclusion that it’s only her mobility affected.
Now, Miss Jodie is a complete Brain box. There is nothing she needs to learn! She could talk the leg of a stool! She has Quadriplegia - The tone in her arms is high, but higher in her legs and the tone in the trunk of her body is low. She can’t sit up on her own but she is now able to sit up on her knees. She was getting around by “commando crawling” and rolling but now she’s starting to crawl up on her knees. This has all come about in the space of a year and a half. It has seemed like a long time because I don’t notice the progress as much as people who only see her from one month to the next. But, when I think back to what she was like when she was first diagnosed she has come on fantastically. Jodie is a very determined little girl. She gets very frustrated because she just wants to be involved in everything and her physical disability stops her from doing this. Her temper is reflected in this and she hits out at me when she can’t get her own way but hopefully this will pass. Her determination is going to stand in her stead and hopefully bring her on leaps and bounds. About 10 weeks ago she pulled herself up on the sofa into a standing position – I was in the kitchen and her dad was upstairs. He came down and just stood there staring and called me from the kitchen. I ran straight over to her and grabbed onto her because she would have just fallen over but even still, she did it! She’s done it a few times since, but although she can pull herself up, she starts to panic once she’s there because she knows she’s going to fall over!
Jodie’s Physio provided her with a Gait Trainer (a photo is attached of her in it!) She has now ordered her a Kaye Walker – a wee frame that she will hold on to from behind which she won’t be strapped in to. Maybe one day she’ll get round without anything, who knows? I know she’ll never walk the same as any other child but I don’t care what she looks like walking, as long as she does it. I know she’s likely to use a wheelchair for long distances but then again, that could change because no-one can tell me what she’s going to be able to do, it’s just one day at a time. It’s good to have some hope but at the same time you need to stay realistic.
Jodie is starting Nursery at Fleming Fulton in September 2006. I feel this is totally the right place for her. I think she’ll excel here, we visited the nursery last Christmas and got a really good feeling about it. She’ll get all her therapies in school, which will give us a degree of normality at home in the sense that no-one will be coming on appointments to the house and we won’t have to run to clinics everywhere.
We wouldn’t be without Jodie. It’s hard work and sometimes I do just cry and think, why her, I just wish she could walk but, reality is, Jodie has Cerebral Palsy and we just have to get on with it best we can. We try to involve Jodie in everyday activities. Even holding her on bikes in the garden and putting her down the slide. Miss Jodie doesn’t want to sit on the swing and watch everyone, she wants to be in the middle of it, zooming up and down the garden on scooters and bouncing on a space hopper! She’s a gem and everyone loves her to bits.
On a note about what’s been provided for her by the NHS: I find it very difficult to get equipment. Jodie was diagnosed in December 04 and I only got a new bath seat in January 06 and a Jenx Table and chair in March 06! Both of which she was assessed for. As for a buggy/wheelchair. Jodie was referred to Musgrave for an assessment and I’ve been told the appointment will be at least a year! This is a disgrace! She’s now 3, she’s 2 stone and very tall. I have to carry her everywhere. She can’t sit up in a regular buggy as she falls to the side. Musgrave gave my Occupational Therapist the name of a couple of buggies they’d provide and she was assessed for one in April but who knows how long it will be before I actually get it! The Equipment makes life so much easier and if the people on the providing end only knew how much it helped maybe the system would change. I’m so glad this website exists and I hope it takes off and that everyone can make friends from it and be able to help each other out with information etc. It would be nice to know we’re not on our own.
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