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Keeping it in the Family: Passing a Hereditary Disorder on to your Kids

He’s here. That little baby you’ve been waiting 9 months to meet is here. He has 10 fingers, 10 toes, and is completely healthy. He is perfect in every way. But there’s one thing lingering in the back of your mind…

I have a hereditary bleeding disorder and there is a 50% chance I will pass it along to my children. Fifty percent. These statistics ring true in my family. My paternal grandmother has it, my dad had it (his only sibling does not) and I have it (my only sibling does not). It’s called von Willebrand’s disease and we are missing a clotting factor in our blood. Due to this disorder, my pregnancy was treated as “high-risk.” I had to have extra doctor appointments and deliver at the Mayo Hospital in Rochester. Even though I was not diagnosed with this until I was 4 years old, our doctors wanted to test our son for it immediately. When he was only a few hours old, they were drawing 3 (3!) vials of blood from his tiny body. We ended up having to have him re-tested at 6 months old and the results came back positive. He has Von Willebrand’s type 2A, the mirror image of what I have.

What it is

Von Willebrand’s is an interesting disorder. To the naked eye, you can’t tell anything is different about us. The only thing that would raise a concern is the medic alert bracelet I’ve been wearing daily since I was 12. We basically get to live completely normal lives and only need to take precautions in certain situations. When the air is dry, we get nosebleeds daily. I’m talking sometimes more than 10 a day. If we have a surgical procedure done no matter how big or small, we must have blood tests done and medication via IV. Contact sports are a big no-no in our world, which doesn’t bother me in the least as I am probably the least competitive person on the planet. But what happens when my son desperately wants to play hockey? Or football? These are roads we will have to travel with caution as he grows older. 

What you can do

When you have a hereditary disorder, and are planning to have children, there are so many questions. What are the statistics of passing it onto the child? How will this affect their life negatively? Or positively? Are the symptoms manageable enough to still live a fulfilling and “normal” life? Do you want your children to endure everything you did growing up? Are the side effects and symptoms different for males and females? Or (even scarier) is it something that is life threatening? There are so many “what if’s” to weigh out in this situation and you truly must sit down and figure out what is best for you and your family. The best thing I’ve found is to educate yourself. Learn the symptoms, the statistics, the negatives and the positives. Take them into careful consideration when you are planning to expand your family. When my husband learned that I had this disorder, he researched it as much as he could and asked questions. 

I consider us lucky. Yes, we have a rare disease that no one has ever heard of before. But we get to lead normal lives with only a few bumps in the road here and there. Some children and families are not so lucky. There are so many fun things we get to pass on to our kids. Our eyes, our love for music, or that cute dimple for example. But for some of us, the things we pass along are not so fun.

Have your kids inherited anything from you?


One Response to Keeping it in the Family: Passing a Hereditary Disorder on to your Kids

  1. Joy Newberg September 21, 2017 at 1:44 pm #

    After I met my husband John and his family I realized that his hearing was genetic. And we had a 50% chance of having a child that was hearing impaired as well. We have one with hearing impairments and one without. While pregnant I also found out that I was a carrier cystic fibrosis in which no one in the family was aware of it all. Thanks the blood test I could not give it to my children.
    Thank you so much for sharing Rachel.