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Even with the support and guidance of specialists like Thurman, for many people, those risks are simply too great. Mary, 33, who has chosen not to share her real name for privacy reasons, has a genetic connective tissue disorder that causes autonomic, neurological and immune dysfunction. One of the medications she takes has been shown to cause deformities and impact the adrenal system in animal studies.
Because of that, when she and her partner began thinking about starting a family a few years ago, she also needed to begin preparing her body to function without this core medication. Although she worked to build up strength and manage increased symptoms, attempts to reduce her dosage resulted in a relapse. “I became bedridden, and despite sticking with the withdrawal schedule for two months, my condition continued to worsen.”
“It’s a matter of looking at the risk versus the benefits, which can be a really complex moral decision.”
Dr Robin Thurman
Mary was referred to a high-risk obstetrics team, but it was clear she needed to restart her treatment. Eventually, specialists advised that even if they were able to stabilise her and proceed with a pregnancy, her general health would be so compromised she wouldn’t be able to work.
“This came as a real blow as I imagine most parents can understand the near impossibility of affording a family on one income. Especially if one parent has additional medical costs,” she explains. “We decided we would need to wait for my health to improve to increase the chances I could still work as well as be a parent.”
Unsurprisingly, that delay has been painful. “We’ve been watching our friends and family welcome babies, which is joyous and wonderful … but we’re stuck with a lot of personal grief that doesn’t feel particularly acceptable to talk about openly.”
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Despite her anxieties, Heldorf is quick to stress how fortunate she feels to have an obstetrician and neurologist who put her needs first. But she still feels external pressures to prioritise the pregnancy at any cost, including her own health.
“Often pregnant people feel they’re treated like a vessel for the foetus, and that can be a really dehumanising experience,” she says, adding that conversations around the best way to manage her medical needs often focus on the risks to the baby. The implication ends up being that “mothers are making a selfish choice if they choose not to go off medication”.
That perspective is familiar to Thurman. “A dangerous message that can come from family and friends is that you should stop your medication now you’re pregnant – that can actually be much more harmful than continuing your medication.”
Instead, Thurman is adamant that the role of medical staff is in finding out where each woman is at and supporting them in their decision-making.
“For each woman, the medication they’re on should be a discussion for them and their doctor, not necessarily their friends and family who might not understand all the nuances.”
Thankfully, as Heldorf’s pregnancy draws to an end, she’s in good health. Still, the weight of her choice is ever-present.
“You have this horrible fear that should anything go wrong, it’s your fault and you’ve made a selfish decision … But you need to balance that against being able to live a life and do a job as a human being beyond being just a vessel for a baby. It’s a really tricky trade off.“
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