The challenges of disability and pregnancy
Congratulations, you're going to have a baby! Scared? Probably. With so many variables and a million books on the subject, parents-to-be can be left feeling bewildered. But for those with a disability, helpful information about your situation is even more important - and even harder to find.
My wife Penny was five months pregnant when I fell from a tree and broke my spine, resulting in paraplegia. Undergoing rehabilitation at the national spinal injuries centre in Stoke Mandeville hospital made the thought of becoming a father an even more intimidating prospect. Many of the images of fatherhood I reached for involved physical interaction; football in the park, carrying our child on my shoulders, climbing frame rescues, even making sandcastles on the beach. Yet over time I realised the real benchmark of fatherhood is making your child feel loved and secure. For me, the staff at the spinal unit contributed to this change. When I was first admitted, the ward sister said, "Even if we have to push your bed to the maternity unit, we'll make sure you're at the birth."
In fact I was discharged a week before our daughter was born in the hospital's maternity unit, where they have more experience of disabled parents than most. The support from other parents with spinal-cord injury was invaluable. Just meeting other people who had "been there" was a huge confidence boost. I realised that it could be done, and done well. They gave me practical advice too - on, for example, the importance of hard-wearing dungarees for a toddler. (Once I had our daughter Rosalie safely buttoned in, I was presented with numerous additional "handles", to make picking her up very much easier).
Yet many disabled parents are not so lucky. Tracy Cottell has scoliosis (a condition that causes curvature of the spine), and as with many disabled people, has become an expert on her condition. "I had to explain to the consultant about my scoliosis, and that it's not a condition that seriously complicates childbirth," she tells me. "Then he left and I noticed a real lack of continuity of care. It was profoundly upsetting to feel that no one was listening to me."
Charlie Foulkes's experience was even worse. Charlie has psoriatic arthritis, a condition that causes painful inflammation of the joints. She was in for a shock when she first told her GP she was pregnant: "His initial reaction was to assume that I had come in to arrange a termination." Charlie was also told, wrongly she believes, that she would not be able to continue with the medication she was taking. "I went through an extremely painful withdrawal. But after a bit of research, I discovered that there are drugs for arthritis that are safe to take during pregnancy."
Charlie now has Rosie, a healthy and happy daughter. "Now I fight to get the help I'm entitled to from social services. All disabled parents in our borough automatically get treated as a child protection issue."
Charlie's experience echoes that of Isabella Devani, a permanent wheelchair user with visual difficulties and two children aged under five. "The main problem I have encountered is staff who, after the Baby P case, are motivated by containing and scrutinising any potential threat, such as a disabled pregnant woman. That, and staff who thought I was lazy for not getting in a bath after birth. After my first child I was devastated by such events - now I know better."
Experiences such as these spurred on Isabella, and others at Disability, Pregnancy and Parenthood international (DPPi), a charity that offers parents support and fills the information gap, to create "Pregnancy, birth and early parenthood - a guide for physically disabled parents." The book contains comprehensive information on pregnancy, professional help, antenatal care and practical parenting, with guides to available equipment.
Among the many suggestions are meeting an anaesthetist before the birth to discuss your options, bearing in mind your disability and any other medications; using a sling that makes it possible to pick up a newborn with one hand; and practising any new manoeuvres you may need, or using any new baby equipment, with a weighted doll.
Shanta Everington, deputy editor of DPPi, says creating a book for disabled parents was not easy. "The challenge is to produce a guide that is specific to the needs and information requirements of a very diverse group. There are lots of questions and concerns that aren't covered in the mainstream pregnancy books. The aim is to empower physically disabled parents and parents-to-be to make informed choices."
Tracy Cottell is impressed. "It contains a lot of information I wasn't aware of, even though I am very used to dealing with the medical system. This can give new parents the confidence to get the care they need."
via guardian.co.uk