By Eva Kraemer and Kelly Gonzalez
For most, mothers are everything. They are the guiding light propelling their children toward their destiny. They are the safe, warm blanket that wraps them when they fall. They are the protectors and disciplinarians. They are the source of encouragement and the teachers of independence.
But what happens when a curveball is thrown into the mix? When child-rearing may include and be complicated by having to be cautious about everyday things, many hospital visits, countless factor infusions, and a more-than-average amount of worrying? Mothers of children with hemophilia or other bleeding disorders don’t give up - they become resilient.
Stephanie R., Victoria K. and Genny M. - three women from various walks of life decided their genetic make-up would not hinder their childbearing dreams. They persisted and started families of their own regardless of the chances of passing along a bleeding disorder. An intimidating task for some, but an inspirational journey for others.
For context, hemophilia is passed down on the mother’s chromosome. This means when a woman who is a carrier of hemophilia conceives, there is a chance she will pass on this genetic disorder to her child. Hemophilia is substantially more prominent in males because it is a recessive sex-linked disorder, but females may also be affected. Deciding to bring a child into this world knowing your genetics may greatly impact your child’s life is even more daunting.
Stephanie is from Michigan and has been married to her husband, Jason, for 15 years. They have 4 children, Addison, Ella, Lila, and Ben, who has severe hemophilia. Stephanie has been aware of the bleeding disorders world her whole life because of her family’s involvement. “I’ve been part of my brother’s journey, my uncle, my cousin... I have seen the progression of the effects of hemophilia from the older generation to my brother’s generation, and I wasn’t as worried,” recalls Stephanie. “To me, there were worse things to have.”
Victoria and her husband, David, have been married for 20 years and are parents to 16-year-old twins, daughter Grace, and son William who has severe hemophilia. Victoria always knew she was a carrier because her dad had severe hemophilia. She was diagnosed as having mild hemophilia when she was just 10 years old.
Married for 15 years, Genny and John from Illinois were college sweethearts. They have a 6-year-old son, Johnny, who has severe hemophilia. Genny shared, “I knew hemophilia ran in my family since my mom had 2 brothers and a couple of nephews with hemophilia. One of my uncles died as a toddler from a head bleed, and we lost one uncle to the HIV he contracted from his clotting factor back in the 1980s. I grew up thinking I couldn’t be a carrier since my mom supposedly tested negative when she was family planning back in the 1970s.”
When bringing up the obstacle of family planning with their respective spouses, the women were informed about the possible risk associated with conceiving a boy. With their partners, each couple took fate into their own hands.
Stephanie shared that there was almost no conversation because her partner met her family at the very beginning of their relationship and knew right off the bat of their struggles with hemophilia. When asked about having children, Stephanie responded, “We knew God would guide us.”
Initially, Victoria didn’t want children because as an obligate carrier, she knew the chances of having a child with hemophilia were great. Her husband, however, was undeterred by hemophilia - he wanted children. Eventually, Victoria became pregnant with twins. After bringing her children into the world, Victoria, with tears in her eyes, asked the doctor if her son had hemophilia. When the doctor replied “yes,” her husband responded with a statement that would guide them through raising their children, “Hemophilia is like blue eyes, it’s just DNA.”
Genny’s sister had a child with hemophilia. She realized her mom’s carrier testing was incorrect and that she had a 50/50 chance of being a carrier. “My nephew was born and diagnosed with hemophilia less than a year after John and I started dating. It was very difficult watching my young nephew struggle with bleed-after-bleed and surgery-after-surgery since he battled inhibitors the majority of his life,” stated Genny. “After seeing what my nephew, uncle, and others have gone through, we struggled with knowingly taking the risk of having a child whose quality of life could be greatly impacted by hemophilia. Nevertheless, we still longed to have children.”
As for starting a life with a newborn diagnosed with hemophilia, each mother had her own journey to dictate. They kept conversations going about hemophilia with their partners and families. They each discovered they weren’t about to let a genetic disorder dictate the way they or their child was going to live their life. Those conversations aren’t easy and require openness from both parents.
Stephanie’s family focused on immersion. “This is our life, our normal, our something unique,” she recalls. There was no specific incident or time, but she and Jason jumped in to learn and understand everything they could about hemophilia.
Learning from past experiences was the way to go in Victoria’s family. David learned about hemophilia through his relationship and experiences with Victoria’s dad before he passed in 1993. Even though he had not experienced hemophilia firsthand growing up as Victoria had, together they have handled every incident and challenge as it has come along.
Genny feels she is blessed as her husband is very knowledgeable and engaged. She recalls before having their own child, her husband was one of the first people in the family to learn how to infuse her nephew. He had even gone on field trips and camping with him without fearing his condition.
Family planning isn’t always easy when you have a genetic disorder. There are unpredictable events that can impact life, but these mothers have advice for anyone considering having a child.
“Children are a blessing to our family. I would suggest families with a known carrier mother prepare to have a child with a bleeding disorder by getting involved with your local chapter, educating yourself, and learning to be an advocate as you plan and make decisions. Ask questions about doctors and treatment options – take responsibility for the preparation, but have faith everything will be ok,” explains Stephanie.
“Do all the research you need and talk to your partner. Do it!” exclaims Victoria.
“Follow your heart. Do what’s best for you and your family,” states Genny. “If you are faced with bleeding disorders, don’t go it alone. Build a squad by meeting others through your local and national bleeding disorders organizations, and learn as much as you can.”
If you know you are a carrier, family planning doesn’t have to be scary or daunting. Get engaged, get educated, take action, and plan for the best. No matter what, know you are among a community of resilient hemophilia moms who will help guide the way. Learn from those who have lived through the experiences in which you may find yourself.
To all the moms in our community and from all of us at BioMatrix, Happy Mother’s Day!
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