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Positives outweigh the negatives

Ellen Bird, a mother with amyoplasia, a form of arthrogryposis multiplex congenita (AMC), from Staffordshire, UK, talks about her experience of pregnancy and early parenthood.

Ellen with her son

I married my husband Chris seven years ago. We didn't want to start a family straightaway but decided that it would be sensible to have genetic counselling. We felt that this would give us plenty of time to think rationally about our options if it was likely that there was a risk of me passing on my disability.

I have amyoplasia, a form of arthrogryposis multiplex congenita (AMC), which means I was born with very stiff joints and a lack of muscle tissue in my arms and legs. Our situation was also slightly complicated by the fact that my sister has Down's syndrome and we wanted to discuss this as well. We obtained a referral for genetic counselling through our GP.

The counsellor was brilliant, explaining exactly what he was looking for in my joints and limbs and why. He said that in his opinion we stood as much chance as anyone else of having a baby with AMC. We were both delighted with this prognosis. The Down's syndrome test was a simple blood test which also showed that my sister's condition wasn't hereditary.

Pregnancy and labour

We were over the moon when I found out I was expecting Callum in March 2008. When we had the 12-week scan and could see Callum lying on his back with his hands behind his head, arms and knees bending, the relief was overwhelming.

The midwives weren't overly concerned about my disability. They referred me to the local consultant to discuss my options for the birth. As my other internal muscles were not affected by AMC, she did not feel that my womb would be, and was fully supportive in me having a normal delivery.

When my waters broke a month early, we made our way to hospital. The labour went well until the ‘pushing’ stage and I remember thinking that maybe the consultant had got it wrong because things weren't progressing as they should have done. It turned out that Callum had the cord around his neck twice and this was causing the problem. After some technical interventions, Callum was born weighing in at 6lb 4oz. It was the proudest and happiest moment of our lives.

I recovered well from labour but Callum needed to be monitored for a while as he was a bit early. The hospital ward wasn't well equipped for me so I was very relieved when we were finally allowed to go home a few days later.

Early parenthood

Then the fun started! I don't want to dwell on negatives but I don't want to give the impression that this has been an easy two years, so here is a quick snapshot of the problems we faced, and more positively, mainly overcame.

From day one I realised it was going to be physically very tough and that lifting Callum was going to be one of the biggest challenges I would face. I'd got a local occupational therapist lined up but she was useless and wasn't interested in helping at all despite my attempts to work with her. I was very anxious in the first few weeks about how I would cope physically with lifting Callum and had several nightmares about dropping him on his head.

Once he had control of his head the lifting got slightly easier and then got harder again as he gained weight but wasn't fully mobile. Every time I felt we were about to reach a point where I wouldn't cope, Callum got a little bit stronger and he started hanging on to me, then crawling and walking.

Every time I felt we were about to reach a point where I wouldn't cope, Callum got a little bit stronger.

I breastfed Callum while we were in hospital and I was living in pyjamas but later on, when we were out and about, coping with my clothes proved impossible. Also, I was very tired from the night feeds. So we switched to bottle feeds which meant I could get some sleep and keep my dignity!

Dressing a wriggling baby also proved difficult but by choosing clothes carefully and through strategic use of Velcro we have muddled through. Nappies were OK until Callum realised he didn't have to lie still! I found a changing mat with a harness so now he gets strapped in – once I have caught him and pinned him down that is! Potty training is around the corner and there will be issues there, I”m sure!

Pushchairs and car seats were also awkward. It can still take me 20 minutes to get Callum strapped in the car but he can at least now climb into the car seat himself. I have a ready stock of sweets and biscuits in the car so he will climb up and sit still. Is that bribery? Probably!

New challenges

As Cal has got increasingly mobile I have a whole new set of challenges to deal with as he can now quickly run away from me. I have invested in good reins and a backpack with a big handle on the back which enables me to drag him out of danger or move him if he's having a tantrum.

The joys of having Callum have by far outweighed the negatives.

I was still struggling with fears about keeping him safe when we were out and about. I read about Alison Lapper visiting a charity in London called the Anna Freud Centre to help control her son with her voice, so I contacted them and made an appointment. They gave me really sound advice about letting Callum be a little boy as much as possible and then using ‘No’ and ‘Be careful’ type of language only when absolutely necessary. This made me feel much more in control and has given me confidence to trust Cal's judgment about his physical abilities.

There will, I am sure, be more hurdles to come as he gets stronger and more physical but I think and hope we”ve done the hardest part because the more he understands, the more we can negotiate and the more he can do for himself. He will certainly be an independent little boy.

What have I learned?

Dealing with the additional challenges on top of being a first time mum has been really hard work. I put a lot of pressure on myself to prove to the world that we were coping brilliantly and I have had to learn that accepting help does not mean you”ve failed.

What else have I learned? Get a cleaner; make meals as easy as possible and have a thousand stews in the freezer for when the baby arrives; think through as many of the challenges you’re going to face as much as you can before the baby arrives. Many of the problems I face with dressing myself have been the problems I face when dressing Callum - buttons, zips etc - so think about how you will cope with this; borrow a friend's baby or buy a doll before you have a baby yourself to try things out but don't forget that your baby will adapt to you; don't be afraid to accept help, if not with the baby then with the washing or cooking, and get people lined up to help for when the baby is born; get professionals involved early; ring the health visitor and warn them you’re coming through the system; do a hospital visit before the baby's born and push for what you need; finally, and most importantly, believe from day one that your best is good enough.

The joys of having Callum have by far outweighed the negatives. He is a beautiful little boy who is very happy and confident and one thing I am sure of is that he will certainly grow up with a positive outlook on disability!

First published DPPI Journal, Issue 73: Summer 2011

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