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Jul 21 2014

What Happens When You Are a Carrier for a Jewish Genetic Disease?

By at 10:13 am

Carriers-part-1

Lauren Weinstein and her husband were expecting their first child when they learned that they are both carriers of a gene that causes cystic fibrosis (CF), one of the 19 common genetic diseases found among Ashkenazi Jews. The prognosis for a child with CF is pretty grim, and Lauren underwent DNA testing to learn if their child would have the disease. Then she managed to write a touching and darkly funny comic called “Carriers” about the period of waiting for those test results, published in Nautilus. She agreed to talk with me about her experience.

1. What was the your initial response when you were told that there was a good chance your child would have CF? Were you scouring the internet?

I have never been a fan of researching any medical issue on the internet. Obviously, it is a writhing pit of misinformation, none of which may pertain to your specific problem, especially when it’s about something as serious as CF. I waited until I met the genetic counselor and the pediatrician. And the picture the pediatrician painted was pretty bleak, unfortunately.

2. Can you tell me about the moral debate that was going on in your head while you were waiting for the test results?

This question kept swirling around in my head, “is it a humane decision to bring someone into the world knowing they have chronic, fatal health problems?”

3. What kind of reactions have people had to the comic? Have you been following the discussion in the comments section?

I have gotten some amazing emails of people in the same boat as us, from people with cystic fibrosis and parents of people with cystic fibrosis. All of this has been very enlightening. It’s showed me how rich people’s lives are even with this chronic disease, and how many medical breakthroughs in the treatment of CF there have been in the last five years.

The comments, both on the NPR blog [which published an excerpt of Lauren's comic] and the Nautil.us site were civil and intelligent (which for the internet is a miracle!) despite the sensitive issues the story touches upon. This is one of the greatest things about the web, that documents aren’t static, that a piece can provoke people to share their own stories, and everyone can learn.

I believe there’s a tremendous potential for comics in helping to cope with hard-to-tackle experiences. They bring the viewer into the moment through the very specific filter of the author.

Carriers-part-2

4. If you had another child would you do anything differently? Would you want to know if he or she had the disease?

This is a very hypothetical question, because right now I feel grateful for the happy, healthy daughter we have. We were extremely lucky that we didn’t have to make any choice. But if we did have a child now I would want a DNA test as early as possible, and I’d also want to get as much information about the new treatments available for the strain of CF. Frankly, the thought of having to make these hard decisions is paralyzing, which is one of the reasons Ramona is 5 and doesn’t have any siblings.

5. Any advice for parents who find themselves in a similar predicament (i.e. they are both carriers of CF or another genetic disease)?

The one thing that I’ve learned, being a parent, is that there are a million ways to do something, and they’re all right. So many pregnancy books give you dogmatic advice. There are religious and spiritual views that people have and if any of it is comforting and helps people decide what they would do in a situation like this, good for them. I don’t feel qualified to give anything substantive. Maybe because the bio-ethical decisions we are asked to make in pregnancy are totally new, and the parameters of scientific discovery are changing every day. It will be different for everyone.

My only thought is: be informed, but don’t drive yourself crazy in the waiting stage. Be prepared to know more than you might have wanted about your past and future. And have good luck.

6. Since we are Kveller and all, where parents go to kvell, what makes you kvell?

I kvell looking at my kid in the pool, tirelessly hurling her body through the water over and over again, trying to float. I totally kvell over the long-form musicals she sings to herself every night after being put to bed. I also kvell when she is brave, like at kindergarten orientation, when she was scared and crying when I dropped her off, and then when I came to pick her up she said, “Mommy, I’m not scared now. I know where the tissues and the toys are.”

And of course I kvell as she learns the ins and outs of friendship and caring for others. Lots of kvelling going on.

Check out parts 2, 3, 4, and 5 of “Carriers” here.

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Note: The opinions expressed here are the personal views of the author. All comments on Kveller are moderated. Any comment that is offensive or inappropriate will be removed. Privacy Policy

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