Guest Contributor
Lorie Kerstetter
Parent and PEP Facilitator
A Carrier Conquers Her Fear to Become a Mother
Planning the start of our family was a complicated, scary decision for us. I knew through genetic testing that I was a carrier, plus I had watched family members grow up dealing with their hemophilia. I saw the wheelchairs, crutches and the hospital stays, the things in life that were missed out on. This was back when hemophilia care and treatments were not what they are today, and my cousin, who had hemophilia, was unfortunate enough to die from complications.
Thankfully, my cousin was also pragmatic. Even on his death bed he knew that the world of hemophilia had changed and was safer, and he had the good sense to encourage me to have children.
Still hesitant though, we decided the best way to prevent passing hemophilia to a son was to have a girl, and so we turned to a fertility specialist. After several unsuccessful implantations we gave up and began accepting we were not going to have children.
Funny how life can surprise you. Shortly after stopping fertility treatment, we became pregnant the old-fashioned way. We celebrated our first born son, Corey.
For help facing my fears about Corey’s health, I turned to a pediatrician at Lancaster Pediatrics to test for hemophilia. I trusted him because he’d been involved with my cousins’ lives, treating their hemophilia. I felt he had treated the “older generation” and could ease our minds and educate us about what to expect. It was a relief to learn Corey didn’t have hemophilia.
Then, what a surprise to learn just a few months later that I was pregnant again. Even before Evan’s birth, we knew he had hemophilia because we chose to have an amniocentesis after a sonogram showed he was a boy. We had worried so much during my pregnancy with Corey that this time we didn’t want to wait. The amnio results allowed us time to ask questions, prepare for the road ahead, talk to doctors, and yes, to deal with our fears.
Soon after Evan was born the pediatrician said to us, “He’s a normal healthy boy who happens to have hemophilia.” He also referred us to the local HTC.
With Evan now 9, I can look back and see how important it is for parents of children with hemophilia to get involved and educate themselves. Then, they need to turn around and educate others – teachers, family members, babysitters. There’s no longer this need to put a child in a protective bubble. Treatments have improved and today’s child with hemophilia can have a much more normal life than what my cousins experienced.
I credit the Delaware Valley Chapter for helping us manage. We joined after Evan’s birth and found information and other supportive families that face similar challenges.
I think that talking with other families is hugely beneficial, yet due to privacy laws it’s often difficult to get someone to introduce you. That’s why I’m working with PEP, Parents Empowering Parents. I helped bring the program to our local chapter. Few programs bring together families like this one does. Along with the basics, we provide parenting training on developmental issues our kids face.
We also discover that we’re not alone in our fears.
In addition to helping educate families about hemophilia, Lorie Kerstetter is a self-employed graphic designer and printer broker, and holds a BA in Graphic Design from Messiah College. She is a school bus driver for the Lititz Area Mennonite School where her sons attend. Lorie lives in Pennsylvania with her husband, Brian, and their sons Corey (11) and Evan (9).