I may never be a mom because of my chronic illness and I'm heartbroken

After my 30th birthday, I felt like 2021 was finally going to be the year I would try for a baby. But just a few days after I saw my neurologist for an emergency appointment to switch my medication, that idea was shot down for the second time.

My heart sank and tears of frustration filled my eyes. I had always seen myself as a mom, and I felt like that right was being taken away from me.

I have relapsing-remitting multiple sclerosis and I am part of a cohort of women in their childbearing years who live with a chronic disease. Deciding when to conceive could greatly affect me and my baby’s health.

Getting pregnant with a chronic disease is possible. But planning around medications, treatments and procedures is important to curtail complicated pregnancies and risks to the mom's health and the health of their baby.

While recent research on women with chronic illnesses who are trying to get pregnant is slim, high risk physician Darine El-Chaar at the Ottawa Hospital says about everything tenth pregnancy in Canada involves a woman living with a chronic illness.

Risk factors for these pregnancies can include preterm birth, small gestational age or growth difficulties for fetuses, and preeclampsia or high blood pressure for mom.

“In a perfect world, we want to talk to moms with chronic conditions before they get pregnant,” El-Chaar explains. “First, we want to look at the mom’s condition—how is her disease stability? The more stable, the better the outcome.”

Jackie Rosen, a woman who lives with a congenital heart defect, vulvodynia (chronic pain of the vulva) and unconfirmed interstitial cystitis (a chronic condition that causes bladder pressures, bladder pain and sometimes pelvic pain) had hoped to get pregnant last year.

The Toronto-based host of a women’s wellbeing podcast called What’s the Difference, says she felt pressure to hold off on kids—both from physicians worried about COVID-19, and her parents who were frightened their daughter would suffer more health complications as a result of a pregnancy.

Rosen was already in her mid 30s and didn’t want to wait any longer to start trying. She got pregnant immediately.

“I didn’t expect to get pregnant that fast,” she says. Due to her myriad of health issues, she had a deep fear of throwing up and was scared of getting morning sickness, which she did develop. Also, because of the pandemic, there were a lot of services that weren’t available to her, like prenatal mental health support. Her parents also reacted poorly to her being pregnant because they were terrified for her health. “Instead of being excited, even though this baby was wanted so badly, my first thought was, I needed to get an abortion.”

While Rosen says she did have some support when she eventually opted to keep the baby, she felt like there was—and still is—a gap for women like her in the healthcare system.

“You feel very left out because you don’t have the information you need,” she says. “I was sure we were doomed because I was such an odd case, that it just wasn’t going to work. I was concerned that no matter what avenue we chose, we were going to strike out because we had such a rare circumstance… I was starting to doubt that I even wanted kids.”

Rosen gave birth to a baby girl on February 8th.

Earlier this year, my medication stopped working. I became temporarily paralyzed on my left side while I was waiting to start my new treatment. For four agonizing months, I had to get around using a walker and I needed to be fed and bathed.

My doctor switched me to a new medication and the first round worked, but that meant I had to wait until the end of 2021 for my final dose before I can think about a baby, otherwise my symptoms can come back twice as bad once I give birth and the medication could cause a serious deformity to the fetus were I to get pregnant.

“The big thing is that women should understand that it doesn’t mean that the pregnancy is going to be more difficult with a chronic illness, but usually it does mean that there is a little more planning involved and usually quite a bit more surveillance,”, says Janet Lyons, medical lead for high risk obstetrics at B.C. Women’s Hospital. “If it’s done right, most of the time we can manage just about anything.”

El-Chaar and Lyons agree that most medications for chronic illness are OK to continue taking when pregnant—they just may need to be adjusted and reviewed by someone with good experience and knowledge of the medications in pregnancy. But it’s important to talk to your doctor if you’re thinking of trying to conceive as some medications can cause issues for mom, baby or both.

Cristina Montoya, a mom of one from Oshawa, Ont., was diagnosed with rheumatoid arthritis in her 20s and told that pregnancy was out of the question because it meant going off her meds, which would cause a tremendous amount of pain.

“I almost felt like I didn’t deserve to be a mom because of my condition,” she says.

Montoya ended up getting pregnant at 36 and gave birth to a baby boy. While the birth wasn’t without complications, it was Montoya’s health that really suffered.

“The arthritis was so active—I was in such pain. I couldn’t hold my own baby. He was only 5 pounds but he felt like an elephant,” she says. “I just felt like something was wrong.”

She complained of shortness of breath, but doctors told her that was normal after a c-section. Montoya was told she had fluid in her lungs, but her doctors told her it wasn’t of significant concern, so she decided to go home. A week after returning, she was back in the hospital.

Being a new mom is hard, period, Lyons says, so add in a chronic illness, and it’ll be tough for mom’s health to get back to 100 percent. That’s where regular appointments with specialists are needed along the way—to make sure mom can stay on her meds safely and that she doesn’t experience a postpartum rebound, making her illness worse.

“There are potential medication changes that were done during pregnancy that are going to need to be reverted back to their non-pregnant status; this is an important transition to have between the pregnancy and postpartum periods,” Isabelle Malhamé, an obstetric internist physician at McGill University Health Centre explains. “A lot of the attention gets drawn to the baby once the baby is born, but we absolutely need to continue to be mindful and careful about the health of mom because a lot of the severe complications happen after the delivery,” she says. “It’s not over once the baby is out.”

“I would argue that there are more high risk women,” says El-Chaar. “In our current culture, we have later childbearing years, and that’s OK…[but] we are seeing that women need a little bit more support.”

It also comes down to educating fellow doctors of the existence of physicians like El-Chaar, who is only able to take on new patients through a referral in Ontario.

Today, my MS is stable. With my new treatment, I finally feel healthy and like I can not only handle a pregnancy, but also that I’ll have the energy to raise a child on my own. With this disease, no one knows what’s going to happen from day to day, but lately, my streak of feeling great reassures a positive prognosis.

My dreams of becoming a mom in 2021 may have momentarily been dashed, but knowing there are resources out there for me and other women with chronic conditions gives me hope that my time will eventually come—and I’ll be ready for it.