‘My baby would always be a carrier of my disability’ – BBC News
Pregnancy can be stressful at the best of times, but, for women with disabilities, knowing there could be serious complications can make it even more daunting.
Beth Whitby knew that pregnancy wasn’t going to be easy for her. She has spinal muscular atrophy (SMA) – a degenerative disease which causes muscle weakness – so has always known that if she were able to carry a child it would be complicated.
Three years ago she began to feel a very strong desire to have children. She had been with her husband for a number of years and both her brothers had kids. But Beth needed to be realistic about her disability, and, determined that children were going to be a part of her life, she had begun to think surrogacy might be her best option.
After becoming pregnant in 2012, she really wanted to speak to other mothers with SMA to get advice, but this wasn’t easy as there aren’t very many. The only thing she could find was a magazine article about another woman with the same disability who had a child. Other than this there wasn’t really any direct advice on how her pregnancy might go.
A further problem was that some people raised their eyebrows at her pregnancy. “I think there’s always an element of that,” she says. “It’s mind-blowing enough for some that I have a job and I drive let alone that I got married and have a baby.”
There were concerns for Beth’s health throughout the pregnancy – she has a small torso due to scoliosis surgery when she was 11, so as the baby grew inside her she was warned she would run out of space and may have breathing problems.
She had to see a consultant every couple of weeks and had more than the usual number of scans in order to keep a close eye on the baby’s size.
On top of this, at 33 weeks she was told she would need a planned caesarean section under general anaesthetic. “They’d hoped I’d reach 35 weeks but I ran out of space so she had to come out,” she says.
Despite planning for lots of poor outcomes, the pregnancy actually wasn’t that difficult, she says, and with the right support she thinks more women with disabilities should be given the confidence to start their own families.
Kaliya Franklin has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes regular dislocations. When she became pregnant at the age of 40 she says it was exhausting. She gained a lot of fluid weight so found it even more difficult than usual to get around, and was very short of breath. “Pregnancy is really quite tough for all women, even women who do pregnancy well, and with EDS there’s such a hormonal impact that pregnancy was like having the worst flare of EDS.”
Like Beth she encountered people who raised their eyebrows when they heard she was expecting but the thing she found most difficult was the amount of attention placed on screening her unborn child for other disabilities.
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“There’s very much an attempt to screen out defects and I found that troubling because every time they mentioned a condition I thought of a person I know with that disability, with a name and a face.”
Kaliya, a prominent disability rights campaigner, chose not to screen her baby for disabilities because she and her partner felt it wouldn’t make a difference to them in their decision to carry on with the pregnancy.
Beth also chose not to be screened, and says even if it had been possible to screen for SMA in her unborn child, she wouldn’t have had it. She and her husband did go for genetic counselling but she says this was only so they could find out if he too was a carrier so they would be able to prepare.
With news this week that a new test for Down’s syndrome will be safer and more accurate, academic Tom Shakespeare from the University of East Anglia, who has Achondroplasia – a common cause of dwarfism – says it is important that people are given balanced information about disability if they are faced with a choice to terminate a pregnancy because of it.
“I could tell you I have a G to A transposition at point 380 of my FGFR3 gene and it would make absolutely no difference to you, but if I say ‘look I’ve had a good life, I’ve been to university, I’ve got two kids and a partner and all the rest of it’ you’d say ‘oh right so you can have a good life with your condition’.
“The vast majority of parents who get a diagnoses [for their child] know nothing, they’re worried and frightened and would rather avoid it. I’m not going to criticise any woman who has a test or any woman who has a termination […] but what I do want is for her and her partner to get balanced information.”
Beth, Kaliya and Tom note there is a certain irony in discussing screening of disabilities when they themselves are all disabled. They say that their happiness and ability to live successful lives with disabilities played a role in their decisions not to screen. However, all three say that choosing to keep a child or terminate a pregnancy because of disability should be left with the woman and her partner.
“Professor Bird (a leading expert in EDS) gave me very wise advice in relation to disability and parenting,” Kaliya says. “He said that whatever the risks, he didn’t think it was any doctor, and particularly any man’s place to tell a woman what they should or shouldn’t do in relation to having children.”
To hear this conversation listen to the Ouch podcast here.