After 17 years of practicing medicine in Iraq, Dr. Dalia Abd Almajed felt like all of her dreams were coming true. She was happily married to her husband Salam, who had landed a new job in Canada where she would soon be joining him while finishing up her PhD in obstetrics and gynecology.
Then, she came down with what she thought was the flu.
Figuring she would take a day or two off to fight off the virus, Dr. Almajed was shocked when she developed severe pain in her arms and legs a week later. Within hours, she realized she couldn’t move and was then rushed to the hospital, where she was placed on a ventilator.
The distinguished doctor turned critically ill patient was diagnosed with transverse myelitis, a disease that affects the spinal cord, which left her entire body paralyzed. The condition was permanent and Dr. Almajed lost the use of both her legs.
When she was discharged after a four month stay at a hospital in Iraq, she joined her husband in Canada. While she was adjusting to her new life in a wheelchair, she received yet another surprise: she was pregnant.
As a doctor, the newly-expectant mother was not only aware of the limitations her condition presented for a healthy pregnancy, but the risks that carrying to term could have for both her and her baby.
But fortunately for Dr. Almajed, there was a nearby doctor who had taken a special interest in caring for mothers with physical limitations and challenges throughout pregnancy. While Dr. Almajed wondered how she would safely transition into motherhood, Dr. Anne Berndl, a high-risk obstetrician, had already come up with a solution.
Dr. Berndl, a high-risk maternal-fetal medicine specialist, created North America’s first-ever clinic for pregnant women with physical challenges — the Accessible Care Pregnancy Clinic at Sunnybrook Health Sciences Center in Toronto, Canada.
Dr. Berndl notes that she had witnessed more and more women with physical disabilities going through pregnancy. She soon realized there wasn’t a standard of care set for caring for these women, so she set about to change things.
While caring for women with physical disabilities for over three years in the high-risk unit, she began working toward her goal of having a specialized accessible clinic. In March 2017, her new clinic officially opened.
“It was a goal of mine to provide care for women with physical disabilities. There’s a lot of misinformation or a lack of information and there are a lot of negative attitudes in general in society about women with disabilities when they are pregnant or parents,” she explains. “I thought, ‘we need to change this'”.
Although the range of physical challenges greatly varies among patients, Dr. Berndl and her team conducted extensive interviews to help them structure the new clinic to best meet their patients’ needs.
For example, the clinic aims to be a one-stop shop to address transportation and mobility challenges, so women can come into the clinic once and see a wide range of specialists, such as a hematologist (women in wheelchairs are at an increased risk for blood clots during pregnancy), a dietitian, an anesthesiologist (for chronic pain management, as a lot of women’s pain changes during pregnancy, according to Dr. Berndl), a neurologist, and others at one appointment. Appointment times are scheduled to align with Toronto’s public transportation service for individuals in wheelchairs.
“The focus is on providing very holistic care in one location that is very patient-centered,” Dr. Berndl explains.
The clinic sees women from pre-pregnancy consultation (to help them decide if pregnancy might be right for them), through prenatal care and delivery. If a woman isn’t sure if she will be able to get pregnant or carry a pregnancy to term, Dr. Berndl and her staff are also able to connect her with reproductive specialists.
Women giving birth through the Accessible Care Clinic will meet with specialists before delivery to help prepare a plan that includes pain control, as well as method of delivery.
Mothers who are able to have vaginal births have access to resources, such as a Hoyer lift and transfer boards, if necessary, to help them deliver on a bed if they wish. They are also able to deliver in any position that is comfortable and maintainable for them.
“We have really lovely birthing rooms at Sunnybrook,” says Dr. Berndl. The rooms include a space for partners to stay and sleep, along with Jacuzzi tubs. There is one accessible room that is large enough for a wheelchair and a dialysis machine. Spacious rooms and a wheel-in shower make mobility and transfers easier.
The clinic also houses operating rooms for C-sections and dedicated staff of OB anesthesia for high-risk pregnancies. After birth, a robust breastfeeding program works with women who choose to nurse. Many patients meet with a lactation consult prior to delivery to set a feeding plan and then meet again one-on-one with the consultant after birth. The center hosts daily ongoing breastfeeding classes, as well as online secured video and phone consultations.
“Getting out of bed with your little one can be a real challenge, so having that availability is a real help,” says Dr. Berndl of the video consultation service.
Dr. Berndl and her staff also make sure to connect their patients with other available resources in their community, including the publicly-funded Nurturing Attendant program, which offers parents assistance in the physical tasks of parenting, such as lifting a baby out of a bathtub or helping with changing. Getting into the program can take about a year, so the clinic gets women who might benefit from the program started right away.
So far, the Accessible Care clinic has seen about 15 to 20 women with more and more consults coming in every day. While she continues to care for women, Dr. Berndl hopes for a day when pregnancy care will be all-inclusive, with universally-designed hospitals and different specialties working together under one roof to provide care for the individual as a whole.
“The majority of women with physical disabilities can have a healthy pregnancy,” Dr. Berndl says. “That doesn’t meant that there won’t be challenges or special circumstances that we need to think about, but it’s something that’s a possibility for many women. I hope that women with physical disabilities feel hopeful that they can have a healthy pregnancy and become a parent.”