Challenging the doubters

Louise Medus, a Thalidomide-impaired mother from Kent, UK, talks to Shanta Everington about her experiences of parenting her two children – Emma and Jack, now aged 21 and 17. Since remarrying, Louise also has two adult stepchildren. Her book No hand to hold & no legs to dance on – a Thalidomide survivor’s story is reviewed in the resources section of this journal.

Louise pictured with her baby, Emma

We were over the moon when we found out I was pregnant. My parents were also very happy for us. However, when I went along to confirm the pregnancy, my doctor was less than enthusiastic. He asked me whether it was good or bad news. I replied “That’s fantastic!” but the negativity in his tone made me feel uneasy. I contacted the General Medical Council and changed to a different doctor who was very open-minded and modern. His approach was to trust that I knew my body well; he saw his role as simply keeping an eye on me.

As I use a wheelchair, I noticed that during my pregnancy the baby found her own position lying across me but I made sure that I lay down at certain times of the day to give her a chance to stretch out in the womb.

The antenatal services at the hospital were generally good; the midwives sat me down and asked me what help I would need. I was fairly independent so I didn’t need a lot of help. Despite this positive start, I was told that I had to have a Caesarean section because I had no legs. They said I wouldn’t have the muscles to push the baby out but I don’t know if this was true. Things progressed naturally until the baby’s head was showing but then I was told that I had to have the Caesarean.

Finding my own way

I worried about how I would feed Emma as I strongly believed that ‘breast is best’. When Emma was three days old, one of the nurses took her away and wanted to bottlefeed her. It was awful and I never let her out of my sight again. I found my own way to breastfeed; I would sit on an armchair with cushions to one side and Emma lying on my tummy.

When I was pregnant, a social worker contacted me and asked if there was anything they could do to support me. I thought ahead about what I might need. My husband worked late and my main concern was the safety of both myself and the baby. We decided that, as a first time mum with a newborn, our best support option for the early weeks would be a maternity nurse. We searched the agencies all over the country for a suitable registered nurse, and found an Australian midwife who was working as a maternity nurse. I interviewed her by telephone, took up her references, and she was in place by the time Emma was born. We funded the nurse from my Thalidomide Trust compensation, so social services were never involved.

After Emma was born, a social worker appeared once and said that we appeared to have sorted everything out so they left us alone. They knew that my child was safe and that I was fairly happy and that was that.

The hardest part of being a new mum was not being able to pick my baby up when she cried. I found it very frustrating having to rely on someone who was not personally connected to me, other than as an employee. Logically, I knew that there were certain baby care tasks like bathing or changing that the maternity nurse needed to help with but my instincts told me that I could do them myself.

I discovered that there was a lot I could do independently. I learned how to pick the baby up by her baby-grow with my teeth. I used a baby carrier until Emma was six months old and when she was too big to be carried in this way, I had my wheelchair adapted by the local wheelchair service with a seat attached to the top so that Emma could sit facing forward against my chest.

When the maternity nurse left, we hired a nanny and there followed a succession of other nannies. Every time there was a change, our pattern was disrupted and Emma had to get used to somebody new picking her up. It was a difficult time but we managed. Jack came along when Emma was three. As the children got older, the nannies were replaced by carers who supported me to look after my children myself.

It’s natural for children to imitate their parents and sometimes my children copied the way that I did things. When it came to colouring in, I would put a colouring pencil in my mouth and the children did the same. I deliberately taught them how to hold a pencil in their hand so that they were prepared for starting school.

Helping children understand disability

When my children asked questions about my disability, I fed them little bits of information appropriate to their understanding. My disability is explainable so it was easy to provide answers to their questions, which they in turn passed onto their friends. I never hid any facts from my children and I encouraged them to ask questions. They would tell their friends that a bad tablet had stopped Mummy’s arms and legs growing but she loves me anyway, she just cuddles me differently. Of course, there were challenging times too. There was a boy who used my disability to pick on Jack, who went berserk and hit him.

I became a prominent figure in the local community. I always dropped my children off at school and collected them. I went to all the school events and became part of the furniture so people knew me. The school children just accepted me as Jack and Emma’s mum. They asked me about my legs and arms and I always answered them.

For the last 12 years, I’ve been going into local schools and colleges to deliver talks on disability to GCSE pupils through to university students. I explain the history of disabled people not being able to go to mainstream school. I ask the pupils how they would feel if someone who was purple with yellow spots came into school. They tell me that they would feel frightened and anxious and I explain that this is how people can feel when they encounter someone with a disability because they see that person as different.

I give the pupils a chance to ask any questions they wouldn’t normally be able to ask a disabled person unless they knew them really well. The most challenging question I’ve been asked is whether I blame God for my disability but it was actually quite easy to answer because my disability was caused by a drug, not God.

Second time around

In August 2008, I married for a second time. My husband, Darren, who is also Thalidomide-impaired, used to be my boyfriend a long time ago but we lost touch over the years and each married other people. He also has two children from his first marriage.

Darren’s experience of parenting was very different from mine. He never picked his children up when they were small as he was frightened that he might hurt them. He didn’t know how to pick a baby up using his teeth. His fear prevented him from seeking out ways to get involved and, sadly, he missed out on that wonderful experience.

First published, DPPI Journal, Issue 66, Summer 2009


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