von Willebrand disease
"I remember thinking how wonderful it was to feel that good. I joked that I felt better at eight months pregnant than I did for decades because of the prophylactic factor infusing care."
“Suzanne almost died going through the birth of our first daughter, Miriam,” recalls Suzanne’s husband, Dan. “It was a very tough, traumatic time for all of us.”
A little over nine years later, Suzanne and Dan welcomed their fourth child, a son, into the family. This time, Suzanne’s experience during pregnancy could not have been more different to her first, largely thanks to prophylactic treatment with Octapharma’s von Willebrand factor (VWF) concentrate.
Suzanne has type 3 von Willebrand disease (VWD), the most severe form of the hereditary bleeding disorder. People with VWD either have a low level of the clotting protein VWF in their blood, or it doesn’t work as it’s supposed to. According to the Centers for Disease Control and Prevention (CDC), 3.2 million people in the USA have VWD. It occurs equally in men and women.
However, women may be more symptomatic due to heavy menstrual bleeding (periods). There is currently no cure for VWD, but patients like Suzanne can replace or supplement the missing clotting factor by infusing Octapharma's von Willebrand/coagulation factor VIII concentrate, which is manufactured from donated blood plasma.
“I always wanted a big family, but Suzanne was not certain at first because of her VWD,” says Dan. Trying to get pregnant with Miriam, their first child, was very difficult, primarily because of the bleeding issues Suzanne faced. “Finally, joyfully, I fell pregnant but almost immediately started bleeding,” remembers Suzanne. “We assumed it was a miscarriage, but the doctors assured us that it was not.” The pregnancy was extremely stressful. As Suzanne recalls: “Each morning, we didn’t know what we were going to face that day.” She was in and out of hospital due to bleeding complications and, at that time, she had no access to factor concentrates.
“I was 26 weeks pregnant, and we had no other option but to go into hospital to deliver Miriam early,” she recalls. There were life-or-death moments during Miriam’s birth. “There was a point where I had to make medical decisions on behalf of Suzanne since she was incapable of making them herself because of some of the treatments they were giving her,” says Dan.
Eventually, baby Miriam was safely delivered but she needed to spend seven weeks in a neonatal intensive care unit. Suzanne spent a week and a half in hospital recovering from the birth.
Von Willebrand disease is the most common bleeding disorder. People with VWD either have a low level of the clotting protein VWF in their blood, or it doesn’t work as it’s supposed to.
It is estimated that 90% of people with VWD have not yet been diagnosed.
If one parent has a genetic change that causes VWD, there is a 50% chance of a child having VWD.
Over the next seven years, Suzanne had six miscarriages, all due to bleeding. “If you’re bleeding that much, you can’t support another life,” she explains. It was a difficult time, but Suzanne and Dan were still able to expand their family:
“Wonderfully, we adopted two children, Josiah and Rachel, and our kids are the light of our lives,” says Suzanne. “Living with a chronic bleeding disorder is not easy, but Suzanne has an excellent attitude to daily life with VWD,” says Dan. That positive outlook is helped to a great extent by Dan and their children, and by her upbringing. “I was diagnosed at birth and have a family history of VWD, so my parents knew to look out for it when I was a baby and we shared experiences as I grew up,” explains Suzanne. That positivity perhaps explains how the couple decided to explore the idea of one more pregnancy despite all the hardships they had experienced.
In planning this latest pregnancy, they began to explore how prophylactic care and factor infusing prior to becoming pregnant could help Suzanne during pregnancy.
Suzanne was not aware that prophylaxis for VWD patients existed. In fact, it was only after attending a patient conference and speaking to other women with VWD that Suzanne heard about the possibilities that prophylaxis could offer her. At the time, she went to her physician but was told that it wasn’t for VWD patients, and she didn’t need it.
After moving across the country for Dan’s work, her new consulting physician immediately offered her prophylaxis and explained that she needed to begin treatment before becoming pregnant.
“Factor infusing is something you deal with before, not after, getting pregnant so that you can have all the support you need to sustain a little life,” explains Suzanne. “I was already using Octapharma's von Willebrand/coagulation factor VIII concentrate on demand but I switched to infusing factor prophylactically and started infusing it three times a week, one month before I got pregnant.”
The difference between her life-threatening first pregnancy and her second was enormous: Suzanne got to do what many “normal” pregnant women do. “I was able to think about nurseries and baby names,” she says. “I really didn’t worry about my health or my child because I had the support that I needed – the support that I deserved and the support my baby deserved.”
“I remember thinking how wonderful it was to feel that good,” she admits. “I joked that I felt better at eight months pregnant than I did for decades because of the prophylactic factor infusing care. I can’t speak enough about that feeling, of being strong and healthy in a way that I had never known was available to me.”
Suzanne safely gave birth at full term to Samuel in June 2021 and the whole family have now settled into their new life together. Like his mother, Samuel has VWD, but Dan and Suzanne are reassured that Samuel will not have to go through the sort of bleeding that she endured, as they will ensure he has access to Octapharma's von Willebrand/coagulation factor VIII concentrate prophylaxis.
von Willebrand disease