Will Our Baby Have NF1?

We just announced on social media that we are expecting Swanson baby #3 in October! We are so incredibly excited and can’t wait to meet the little one!

This is a really personal post and I’ve read and re-read it a bunch of times. I’ve been hesitant to post because maybe I’m oversharing…Here’s the thing though: I feel like I’ve been very public with our family’s journey the last couple years online through Oliver’s cancer treatment and Eliza’s treatment for her eye tumor. Because I’ve been so public, I’m going to address having another baby with the potential for having a genetic condition. I know not everyone is going to agree with me, and that’s ok. We aren’t all coming from the same views on life. I’m not writing this for anyone’s approval or coming from a need to explain myself. Ultimately this comes down to us and God. I believe that every life is a gift from God and he has each person’s life planned. I’m writing this because I know that those who have followed our story may be curious, or there may be other NF1 parents read this and may have faced this question themselves or will have to think about this in the future. I’m in a facebook group for parents of kids with NF1 and I know this can be a divisive topic!

We met with a genetic counselor twice to discuss NF1 and the potential risks and outcomes of having another baby. My first question was if having another baby would have a high chance of leukemia again. Our genetic counselor told us that having another baby with leukemia would be a 1 in a million chance again because Oliver had a DOUBLE genetic mutation. If he would have had one without the other he wouldn’t have developed his leukemia. I would obviously never want to put another child through that if I had the choice.

Most people with NF1 never develop any malignancy related to NF1 – if they develop tumors they are usually benign (like Eliza’s). 2/3 of kids with NF1 will never have major medical symptoms. Eliza and Oliver happened to both be in that 1/3 that did have major issues. Around 15% of kids with NF1 will get an optic glioma, but less than half of those kids need treatment. If you are interested in seeing more statistics about NF1, ctf.org (Children’s Tumor Foundation) is an amazing resource with tons of statistics and resources!

I could go on and on throwing statistics of this and that out, and how the most likely scenario is either no NF1 or a mild case, but with NF1 (and really, life in general), there are zero guarantees of what will happen. I’m just beginning the second trimester of pregnancy, and I know that even a full healthy pregnancy isn’t guaranteed to anyone – genetic conditions or not! I’ve learned in the last few years that we like to pretend we have a whole lot more control over our lives than we really do.

This baby does have a 50% chance of having NF1. I have NF1 (I don’t “carry the gene” for it – you either have it or you do not have it. The symptoms of it vary widely person to person and there is no way to predict mildness/severity). Eliza and Oliver both have NF1, but we didn’t know they (or I!) had it until Eliza was 3 and Oliver was 1.

I had a doctor tell me that if I want to have another baby, I could get pregnant, do genetic testing, and then terminate the pregnancy and “try again” if the baby had NF1. I was flabbergasted the doctor said that to me…again, I HAVE NF1. It was like the doctor telling me my life should have been terminated. WHAT! All this to say, we WILL get genetic testing done, but it will be after the baby is born. This way if they DO have NF1 we can do regular screenings to catch any issues early on.

Our kids have had challenges, sure. But they also have incredible, full, happy lives. They are full of joy, have friends, will go to school and are not suffering. They are not worth less because they have a piece of genetic material in the wrong spot. Goodness gracious.

Honestly, when you have a child, there are ZERO guarantees what is going to happen. Signing up for parenthood is signing up for risk of heartache. God gave us two incredible kids in Eliza and Oliver. I think they have an amazing story to tell of God’s faithfulness. This world is full of brokenness, and we have seen that first hand. Our world struggles with those with differences. I think we have come a long way, but there is still more advocating to be done. I know some people with NF1 choose not to have children of their own, and some have 5 kids! We’ve prayed about this baby and we have the support of our close friends and family.

I’m very open about discussing NF1 and our family’s journey if you have questions. Like I said above, ctf.org is a great resource on statistics and resources for NF1 families. Thank you for taking the time to read!

4 comments

  1. Kristine Bolt · April 12

    You go girl : ) Thank you for sharing. Every child is a blessing. You and Seth know what could be in the future but have decided to think on the positive side of the situation. You both have strong family and friends support. I keep Eliza and Oliver in my prayers. I love watching them on Facebook riding their bikes. I will add “Little Swanson” to my prayers.

    Liked by 1 person

  2. Barbara J Mellema · April 12

    Ditto that. Amen and amen. Blessings to your beautiful family. Thanks for always sharing your life.

    Liked by 1 person

  3. Peggy A. Weber · April 14

    You are wonderful parents. Blessings to you and your family. What a blessed baby to have you as parents and his older brother and sister and his Swanson grandparents. Best of health to all.

    Like

  4. Luisa · April 14

    Congratulations again! Your kids are beautiful! Blessings to your family 🌷

    Like

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