Not all medication is ‘pregnancy-safe’. So how do you calculate the risks?

Discovering you’re pregnant is supposed to be an exciting moment. Gazing down at a positive test, there are many common questions that cross people’s minds. Am I ready? Can we afford this? Who should I tell first? But for many birth parents, that rush is tinged with another concern: can I stay on my medication?

The demands pregnancy places on the body are immense. And for individuals dealing with chronic and complex health conditions, those pressures are compounded. Not only because of the stress of a foetus but also the reality that many of the life-changing medications that keep them well may not be pregnancy – or breastfeeding – safe.

Anna Heldorf was diagnosed with epilepsy as a teenager.Credit: Joe Armao

Anna Heldorf, 37, is currently pregnant with her first child. When she was 17, she was diagnosed with epilepsy and has been on a combination of medications to manage it ever since. One of those drugs, Epilim, can increase the risk of birth defects. She always knew that having a family would mean she’d need to go off the medication and, in doing so, face an elevated chance of seizures.

“Navigating pregnancy hasn’t been a straight line between getting pregnant and feeling joyful,” says Heldorf. “It’s like, I’m pregnant, and now I have to go off my medication? What if I have a seizure? Seizure can be incredibly dangerous. It adds a layer of anxiety. You feel like you’re damned if you do and damned if you don’t.”

Dr Robin Thurman is familiar with that dichotomy. As a specialist in maternal foetal medicine and high-risk pregnancies, she regularly helps birth parents navigate decisions concerning vital medications. When advising patients with chronic health conditions, she says that the first questions are: is this medication safe for pregnancy, and is this a necessary medication?

“If it is safe, I can reassure them. But if not, we can look into changing to safer, but still effective, treatments or strategies.”

However, the way forward isn’t always clear, especially when a personal decision around an acceptable level of risk must be made. “There are some medications we know can cause birth defects in babies,” Thurman says. “However, if a woman absolutely cannot be on any other medication, she may make the decision to stay on it, knowing that overall there is still a greater chance that her child will not have that birth defect.”

Unfortunately, sometimes an alternative isn’t available, or a patient has tried different approaches without success. “It’s a matter of looking at the risk versus the benefits, which can be a really complex moral decision,” says Thurman.

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.”

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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