At Sunnybrook’s Accessible Care Pregnancy Clinic, women with physical disabilities are cared for from pre-pregnancy consultation to weaning.
When Dalia Abd Almajed’s smartphone disappeared, she knew her 18-month-old daughter must have taken it and abandoned it somewhere in the house. But where? The ringer was off and Dalia was too busy with her newborn son to hunt for the phone.
Most people would be frustrated, maybe frantic. But for Dalia, it was no biggie, barely registering in a life full of challenges. Dependent on a wheelchair for mobility, the 38-year-old mother has managed two pregnancies and the birth of two healthy babies in the past couple of years.
“Everyone is unique in terms of needs”
Coping with the logistics of pregnancy – transportation to medical appointments, transferring from a wheelchair to the examination table, coordinating meetings with specialists – poses a huge challenge for mobility-disabled women like Dalia, who immigrated to Toronto in 2014.
And that’s before labour and delivery and bringing a newborn home. “My medical condition is complicated,” explains Dalia, who practised as a physician in her native Iraq before developing transverse myelitis, a disease affecting her spinal cord. “Pregnancy itself, for everyone, is complicated. So my pregnancy, [because I’m] in a wheelchair, was a very complex case. I needed many referrals, many specialists – respirologist, hemaetologist, neurologist, dietitian, anesthetist.
“I was afraid. I was thinking, How will all this be arranged? Will they be able to care for me?”
Fortunately for Dalia and other women in Ontario of reproductive age with disabilities, the Accessible Care Pregnancy Clinic opened recently at Sunnybrook. North America’s first clinic caring for pregnant women with a wide range of physical mobility disabilities. It was the idea and the passion of Dr. Anne Berndl.
“It’s been my personal project since I started here,” notes Dr. Berndl, a maternal fetal medicine specialist and director of the clinic. “Before I became a doctor, I worked in a home with foster children with disabilities. It gave me a lot of insight. Everyone is unique in terms of needs. There’s no standard approach to people with physical disabilities.”
Dr. Berndl was already caring for pregnant women with disabilities as part of her practice as a high-risk obstetrician at Sunnybrook. She became Dalia’s obstetrician halfway through her first pregnancy. By the time the Accessible Care Pregnancy Clinic officially opened in May, Dalia was well into her second pregnancy.
“For the second pregnancy, I didn’t have many concerns because I knew that they will deal with it very well and they know what I need,” says Dalia. “I felt confidence in the team, in the hospital itself. They were listening to me.”
Just as listening to the heartbeat of the fetus in the womb is the key to caring for the unborn infant, so is listening to the patient, which is at the heart of how obstetrics is practised at the clinic. For several years prior to the clinic’s official opening, pregnant women with disabilities who came to Sunnybrook were invited by Dr. Berndl to take part in exit interviews. They were asked: What do you need? What would you want to see in a clinic tailored for women with disabilities? What should we be doing better at Sunnybrook?
It was from those interviews, notes Dr. Berndl, that Sunnybrook came up with the framework for the Accessible Care Pregnancy Clinic. For example, she made sure there was a scale that can accommodate wheelchairs. Without it, women using wheelchairs tend to not be weighed properly – or even not weighed at all.
There’s also a concerted effort at the clinic to meet the special needs of pregnant women with disabilities. “The ultrasound bed was higher than the wheelchair,” recalls Dalia. “The technician was able take the ultrasound while I was sitting on the chair.”
Allowing extra time for procedures, such as Dalia’s ultrasound, and for getting from one appointment or lab test to the next is built into the clinic’s scheduling.
“Logistics is one of the hardest things we’ve been working on,” says Dr. Berndl. That includes allowing extra time for transfers and positioning the patient; for consolidating care, so appointments are coordinated and especially for the TTC Wheel-Trans schedule. “We’re learning a lot about the challenges of transportation,” she adds ruefully.
Nevertheless, Dr. Berndl is determined that every woman’s needs are considered and properly accommodated.
The first tenet at the Accessible Care Pregnancy Clinic, according to Dr. Berndl, is to respect each woman as an individual. Every member of the health-care team, including ward clerks, is coached to treat every patient with dignity and understanding. “These women deserve respect and encouragement just like any other woman,” says Dr. Berndl.
This attitude is light-years away from how society in the past regarded pregnant women with disabilities and, in some cases, even up to now.
“I sensed that these women were feeling highly discouraged from having pregnancies,” observes Dr. Berndl. “They’d feel the negativity, the stigma from health-care professionals as well as from others, when they were pregnant.”
Because pregnancy may affect the health of women with disabilities, the clinic encourages pre-pregnancy consultations. “They can ask about concerns and about what may happen,” says Dr. Berndl, “and then feel good about their decisions.”
The connection that begins with the pre-pregnancy consultation doesn’t end until the baby is weaned. An advanced practice registered nurse (APRN) calls every patient before the first visit, explains Dr. Berndl.
“We ask: What are your needs? What could we be doing to make it more comfortable for you? How is your mobility? Before [the patient] comes, we’re ready,” notes Dr. Berndl.
She also points out that at Sunnybrook, there are a number of subspecialists to see women with disabilities and who go out of their way to adjust to the patients’ needs. “Two weeks ago, a neurologist asked me, ‘Do you mind if I just run upstairs to your office and do the consult there?’ There is so much enthusiasm [here at Sunnybrook] for this clinic,” says Dr. Berndl.
A lactation consultant is available after the birth. As well, the Accessible Care Pregnancy Clinic connects new mothers with community resources. “[We try] to make those linkages early on,” says Dr. Berndl. “These mothers are exhausted and overwhelmed, especially if there is no one out there to support them.”
For Dalia, all of these support services have made a huge difference. She has no family in Canada other than her husband, Salam, who worked in Iraq as a biologist and is now training as a lab technician. “The social worker at Sunnybrook arranged for contact with the CHC [Community Health Centre] to provide help with the baby and to give me time to rest or sleep.”
While managing the pregnancy and postpartum recovery is routine work at the clinic, the ultimate goal is a comfortable labour and the delivery of a healthy baby, with vaginal delivery whenever it’s possible.
Labour and delivery plans are drawn up with input from the entire interdisciplinary team, and every member of the labour and delivery team receives a copy, including the patient herself.
“She is the leader of her own team,” emphasizes Dr. Berndl. “Even if she comes to the hospital at 4 a.m. on a Tuesday in a triage situation, she comes with the plan. We’re always making sure that everyone knows what is going on. Excellence in communication is another one of the tenets of the clinic.”
Being able to communicate is also important for new mothers. That’s why Dalia finally went hunting for her phone.
“My daughter plays with it and throws it everywhere,” she says. “It was under the bed.”