After the birth of her first child in 2020, Roa Alsajjan experienced excessive postpartum bleeding, fatigue and depression. She assumed that these symptoms were isolated until her second pregnancy early last year, when she was diagnosed with Factor XI deficiency – a rare blood clotting disorder that puts her at increased risk of severe bleeding, both during and after labour and delivery, and could be inherited by her baby.

Looking for help managing these risks, Alsajjan was offered a spot in a one-of-a-kind St. Michael’s Hospital clinic that would keep her – and her unborn baby – healthy and safe.

Established in 2014, the Multidisciplinary Clinic for Women with Bleeding Disorders (MCWBD) provides assessment, treatment, care, support and education to pregnant patients with bleeding disorders. It’s one of only four similar clinics in Canada and the only one with an anesthesiologist and pediatric hematologist on the team, driving the clinic’s unique specialty treating expectant patients.

Sign up for the Unity Health Toronto newsletter, a monthly update on the latest news, stories, patient voices and research emailed directly to subscribers. If you haven’t subscribed yet, you can do that by clicking here.

“Several years ago, I remember thinking, we have the largest bleeding disorders program in the country, we need to have a multidisciplinary clinic for women with bleeding disorders,” says Dr. Michelle Sholzberg, clinic co-director and Division Head of Hematology-Oncology at St. Michael’s.

“Most other clinics in Canada are led by hematology and obstetrics-gynecology, which was my plan too, but then I got pregnant, had my own blood problem, and I realized that we’d be doing a disservice if we narrowed our focus to two specialties.”

Pregnant patients with bleeding disorders are often denied adequate pain management given the increased risk of bleeding in the epidural space, which can lead to permanent paralysis, says Sholzberg. There are also important implications for the baby as these disorders are inherited or can be transmitted across the placenta-blood barrier.

That’s how Sholzberg met Dr. Rachel Martin, an anesthesiologist, and Dr. Jillian Baker, a pediatric hematologist and newborn specialist. She invited them on board and together, with Dr. Filomena Meffe, Chief of Obstetrics and Gynecology at St. Michael’s, the foursome launched the clinic. 

“I don’t think I would’ve recognized the importance of having an extended multispecialty and multidisciplinary team had I not had the personal connection,” says Sholzberg.

Network of specialists keeps mother and baby safe

In many health care facilities, expectant patients with bleeding disorders are induced or encouraged to deliver via C-section to give the medical team more control. At. St. Michael’s, the MCWBD team encourages patients to labour spontaneously, so long as it’s safe for them and their babies to do so.

The clinic operates on the fourth Monday of every month. Patients meet with the relevant physicians one-on-one, then the team – which includes a nurse practitioner, pharmacist and specialized nurses – collaborates on a multidisciplinary care plan for each patient. The plan outlines anesthetic, obstetric, hematologic, neonatal and postpartum care, as well as the safest method of labour and delivery for each patient.

Plans are outlined in chronological order and grouped by discipline so that a clinician who’s unfamiliar with the patient’s case or doesn’t have experience with bleeding disorders could step in if the patient went into labour without the MCWBD team present.

“This could be a significant safety factor for the patient,” says Meffe. “Most health care professionals aren’t taught how to properly treat this patient population in their general training. That’s where the idea for these plans came in. We translate the care we provide in our extreme sub-specialization for anyone.”

Pretty quickly, the team realized that their care plans were being followed.

“That our colleagues were listening and being respectful of our advice and expertise was major,” says Meffe. “It gave us some comfort and flexibility knowing that we’d taken the necessary precautions ahead of time and could trust that if one of us wasn’t on call, the care plans would be followed to a T.”

The comprehensibility of these plans also allows patients to deliver their babies outside of St. Michael’s, if that’s what they prefer. Once a treatment plan is complete, the team sends a copy to the patient, as well as their obstetrician, creating a network of specialists that has the patient’s best interests at heart.

“The focus is patient-centred care,” says Martin, who now works at St. Joseph’s Health Centre and has since moved on from the clinic. “We strongly believe that if the patient is from North Bay and her family resides there, it’s better for her to deliver in North Bay, as long as we can identify the champions who’ll follow our plan and we feel that the mother and baby are going to be safe.”

Since Martin’s departure, the clinic has been supported by St. Michael’s anesthesiologist Dr. Jeff Wassermann. The presence of an anesthesiologist in the clinic means that more patients are able to get epidurals and adequate pain management.

“Ninety per cent or more of our patients are getting an epidural safely because of the anesthetic expertise that Dr. Wassermann provides,” says Sholzberg. “We feel strongly in providing treatment that allows for adequate pain control. The four of us who founded the clinic have all had babies – we know that good pain control is best for everyone involved!”

Caring for the littlest patients with bleeding disorders

Setting the clinic further apart is the involvement of Baker, a pediatric hematologist and newborn specialist (a unique combination!), who provides antenatal consultations for each patient – care planning for possible complications with the infant at delivery or in the first few weeks of life. This is critical, as most bleeding disorders are inherited or transmitted across the placental-blood barrier.

The infants are also assessed by Baker immediately after delivery and if needed, rerouted through the Hospital for Sick Children (SickKids) for follow-up care and assessment.

Two days after Alsajjan, the patient who was diagnosed with Factor XI deficiency during her second pregnancy last year, gave birth to her second child, the infant experienced bleeding and needed to be rushed to SickKids. Alsajjan’s husband called Baker, who alerted the emergency department and hematology teams. Everyone was prepared when the infant arrived.

“Thankfully it was nothing serious but it was handled urgently and the teams knew what to do,” says Alsajjan. “We were panicked but we felt really reassured and taken care of.”

This arrangement has strengthened the relationship between the two hospitals and created an interesting linkage for Baker, who has hospital privileges at both sites.

“We’ve created a really neat loop in which young women graduate from the bleeding disorder clinic at SickKids and become patients at St. Michael’s,” she says. “Then, when they have babies, a lot of them deliver at St. Michael’s and then their babies are referred over to SickKids. It’s nice continuity for us.”

Baker’s pediatric colleagues have also developed a better appreciation for perinatal hematology and adult care, she says.

“My team is really proud that we can have babies with bleeding disorders born safely at St. Michael’s and that we can administer clotting factors if needed,” she says. “We have a program where I can bring in babies for day transfusion and our nurses are really proud of the skills they’ve developed.”

The day the clinic started coincided with the opening of the team’s research database, which has led to numerous clinical studies to advance care for future patients. It’s also given the team a multitude of education opportunities for medical learners.

“There are now considerably more perinatal hematology fellows, and we’re getting more and more requests to join the clinic,” says Baker. “People have caught wind of this. I didn’t learn much about this in my training so we’re becoming a special hub for obstetrics and pediatrics, and other specialties too.”

Easing anxiety for young women with bleeding disorders

Young women with bleeding disorders start worrying about pregnancy and childbirth early in their lives, says Sholzberg. Or, they may write off the possibility of pregnancy altogether.

“I can’t tell you how many patients come to me and say, I can’t have children,” she says. “The anxiety starts really early. We get referrals from SickKids all the time. But then we get to tell them that actually, we have a really great clinic at St. Michael’s, and you safely can.”

Proof of that are the 377 babies that have been born through the MCWBD, and the high volume of patients who have returned for second or third pregnancies.

“We get the satisfaction that a family doctor has when one of their babies has their own kids,” says Shamshah Aratia, the clinic’s bleeding disorders-focused nurse practitioner. “We feel proud when we have repeat ‘customers’ and we get to see the confidence they’ve gained from the clinic experience.”

Almost a year after the birth of her second child, Alsajjan says that she and the infant are doing well. She recently had a follow-up appointment with Sholzberg and her children had an appointment for genetic testing at SickKids, to see if they carry the same Factor XI gene mutation as their mother.

“This is definitely the place you want to be if you have a bleeding disorder,” says Alsajjan. “The team is amazing, everything is so organized and I felt comfortable knowing that nothing was going to fall through the cracks. I’m really grateful for the team, and grateful for the care I received at St. Michael’s.”

By: Anna Wassermann

Related Tags