Hope changes everything

Gabriella Carafa reflects on her daughter’s birth in North America’s first Accessible Care Pregnancy Clinic and Sunnybrook’s person-centred approach

On the day that Gabriella Carafa was scheduled to deliver her daughter Giovanna by caesarean section, Sunnybrook sonographer Vasi Stratulat waited with bated breath for the good news.

After nearly nine months of caring for the mother-to-be and watching her baby grow in utero, Vasi was anxious to see the infant safely delivered and in Gabriella’s arms.

“My goal is always to see how much I can connect with a patient, to get to know more about their personal life and what they’re going through,” Vasi says. She approaches every appointment on the patient’s own terms, actively listening to ensure everyone feels heard before beginning an examination.

Over time, Vasi says: “You get to be a little bit closer – not just with the mind, but with the heart.”

Person-centred care

A uniquely person-centred approach to pregnancy care defines Sunnybrook’s DAN Women & Babies Program and its Accessible Care Pregnancy Clinic. Established in 2017 by Sunnybrook high-risk obstetrician Dr. Anne Berndl, the clinic – North America’s first – provides specialized care for women, trans and non-binary people with physical disabilities who are pregnant or contemplating a pregnancy. More than 200 patients have benefitted from the clinic’s multidisciplinary assessment and care, which extends from family planning through pregnancy, labour and the postpartum period.

Dr. Berndl leads the clinic with advanced practice nurse Liz Jung, a specially trained sonography team and a full range of specialists, including orthopaedic surgeons, neurologists and rheumatologists, and access to physiatrists, occupational therapists, physiotherapists and social workers.

Gabriella and Giovanna enjoying their favourite park.

“A conversation of possibility”

Two years after her daughter’s birth, Gabriella says the clinic’s approach to person-centred care continues to resonate with her. “It was always a conversation of possibility,” says Gabriella, who herself brings a similar approach to her own work as a perinatal social worker.

Planning to be a single parent by choice, I appreciated being able to access the clinic for pre-conception counselling. Dr. Berndl and Liz answered my questions openly and I always felt we could approach what was to come as a team,” says Gabriella. “When I did become pregnant, challenges were navigated together and successes were celebrated together.”

Gabriella thinks back to the clinic’s approach to her ultrasound appointments. “Everyone took the time to make sure I was comfortable during ultrasounds,” she says. “They explored whether I needed a different position or extra pillows. It was never, ‘We have to do it this way.’ They focused on what was possible for me and the additional supports I needed to get there.”

Sunnybrook’s Accessible Care Pregnancy Clinic is widely regarded as the model for high-quality obstetrical care. Believing that every person with disabilities has a right to barrier-free care, Dr. Berndl and her team wrote and published new clinical guidelines through the Society of Obstetricians and Gynaecologists of Canada. They are the first guidelines in the world to assess birth care for people with disabilities.

Commitment to health equity

The Accessible Care Pregnancy Clinic is supported by donors who value Sunnybrook’s commitment to health equity and personalized care for people with complex health needs.

“There’s such a history of prejudice and bias against people with physical disabilities yet we know that we can help many people have a safe and healthy pregnancy,” Dr. Berndl explains. She and her team prioritize personalized care that is respectful, cognizant of each person’s individuality and grounded in an understanding that every patient is an expert in their own body and their lives.

Among many examples, that means including family members in caesarean births, organizing birth photos for moms who receive a general anaesthetic and matching every patient to a sonographer who cares for them throughout their pregnancy and sometimes even makes a special visit to mom and her newborn.

Shared hope

Today, watching Giovanna, now two years old, run toward her with her arms held wide, Gabriella smiles at the thought that, soon, other Canadians with disabilities will have access to the exceptional kind of care she received.

Dr. Berndl and Liz aren’t just changing care in the clinic, they’re changing care more broadly. There are future generations of people growing up now and may not yet be thinking about having children, but who will have so many more options for safe care because of Sunnybrook,” Gabriella says.

“That’s my hope and I feel like it’s also their hope.”

Gabriella reaches out to pull Giovanna onto her lap and snuggle her close, adding: “I’ve always believed hope changes everything.