My daughter was six days old when we found out she has cystic fibrosis. The pulmonologist sent specific instructions asking us to stay away from Google until our first appointment, which was two days away.
He said most of the information we would find on CF would be completely outdated. I had two days to sit and cry about my baby, so I Googled CF. It was horrifying. It was heartbreaking. It made me question if I should ever have more children. But here’s the thing: he was right. It was all outdated. Eventually I would learn that.
But since my daughter’s diagnosis 5 years ago, I have learned something else. And that is, you can’t always trust a doctor. After all, in some cases, it’s been 20+ years since a doctor has been through medical school, and they can’t all be experts on every single illness and condition. One mom proved that point when she aborted her daughter with cystic fibrosis at the advice of her Ob/Gyn without talking to a single knowledgeable soul about it. And now another mother is helping to spread the fear of having a baby with CF, fueled by outdated information.
In a cartoon, the author Lauren R. Weinstein sketches out what life was like after finding out that she and her husband were both CF carriers, and how it felt to wait for the test results to come back on whether or not their unborn child had CF. She says that she spoke with a specialist. But she doesn’t say if this specialist was a pulmonologist, or what exactly his or her credentials were. Either way, the information the author relays is inaccurate. And it’s dangerous and irresponsible to give out inaccurate information on something as serious as a genetic condition like CF.
She writes that the doctor said the following:
At first your child will seem normal, but then there will be frequent trips to the hospital. Your child may be in pain. … with a poor quality of life… and there is no cure. His or her brain will not be affected, however. Unfortunately you both have a very severe strain of the mutation. You could be looking at a lung transplant in childhood.*
That asterisk appears at the end of that sentence because originally Weinstein wrote that her child would be guaranteed a lung transplant by age 5. That’s completely inaccurate. Furthermore, it is rare for a child to need a lung transplant for CF. Does it happen? Yes. But a person’s own genetic makeup also has a part in determining how sick she will be in life. Even a brother and sister with the same mutations can have totally different outcomes.
As for the severe mutation that they both have, Weinstein doesn’t say which it is. But later she does mention the F-508 gene, or delta f-508. She says it has been traced back 52,000 years, when “Tim [her husband]’s and my forebearers [sic] were spreading across the planet.”
Delta f-508 is the most common mutation in CF. Ninety percent of people with CF have at least one copy of this mutation. And 50% have two, like my daughter. It is a common misconception that it is the more severe of mutations. However, delta f-508 is actually a level II mutation, level I being the most severe. Again, Weinstein’s information is inaccurate if that is indeed the mutation she and her husband both have.
As for a child dying from CF at age 5, is it possible? Yes. Is it a guarantee? No. My child is 5. She is not in pain. She has never been hospitalized for CF other than one night under observation after sinus surgery. She doesn’t in any way have a “poor quality of life.” She goes to day camp and school. She takes swimming lessons and goes to dance class. And when it comes time to do her twice daily treatments, she does them.
Ninety-nine percent of the time she doesn’t even bat an eyelash. Because her treatments aren’t painful, and she gets to watch TV or play games while she does them. There are days when she actually begs for a treatment, because it’s her time to do what she wants.
Then Weinstein shifts to talk of termination. She depicts this scene between herself and her husband:
[Tim:] But if we brought this child in to the world we’re basically guaranteeing it a life of pain.
[Weinstein:] Yeah. And the kid would be totally aware of it.
How do you make the decision to deny someone a life? But knowing what we do, how could ‘termination’ not be the most humane choice?
Maybe my body threw out the bad version during the miscarriage and is keeping this one because it’s good?
Again. The child is not going to be guaranteed a life of pain. A tiny bit of research or a few minutes watching the news would prove this. New medications are on their way to the FDA in the next few months. These medications have been shown to decrease the number of lung infections and hospitalizations people with CF have. And that was proven in adults with CF. Getting that medication to young children could offer them a normal lifespan.
If Weinstein and her husband have a child today with CF, it’s a whole new ball game. And people with CF are winning. Termination is not a humane choice. It’s the removal of choice from the person you are killing. Your child will literally never be able to make a single choice ever, because you decided that her life wasn’t worth living.
As for Weinstein’s first pregnancy ending in miscarriage – that baby wasn’t a “bad version,” whether he or she had CF or not. That was her baby. Just like my daughter isn’t a “bad version” or a mistake of any kind. Any baby deserves to live and to be loved for who she or he was regardless of CF. I’m sorry she lost that baby to miscarriage. But that in no way means that her baby had CF and that her life wasn’t worth anything.
Eventually, Weinstein finds out the news that her baby doesn’t have CF. She’s thrilled, of course. And I don’t blame her for that. No good parents want their child to be ill. But then she goes on to write about having another baby, and she says they would have to make the decision of whether or not to abort the baby if the baby has CF.
But that decision is based on inaccurate information. Information given to her by an irresponsible, misinformed doctor. And if other doctors are being equally reckless with their research on cystic fibrosis, it’s no wonder that people are aborting their children with CF and other conditions at heartbreaking rates.
Termination should never be a decision that parents feel they have to make. And in this case, it’s clear that the parents wouldn’t want to terminate but feel that they might have to. What kind of a choice is that? It’s not a choice at all.
Parents: always get a second opinion. Always talk to a family who is raising a child with your child’s possible condition. And always remember that your child is your child and deserves the life that began when she was created. Just because her life might have some suffering doesn’t mean her life isn’t worth living. After all, we all suffer in one way or another. It’s just that most of us didn’t have to go through a test as an unborn child to find out what heartbreaks and agonies would occur in our lives. If we did and our parents didn’t like it, we could have been aborted, too. And any healthy child could be diagnosed with cancer or be injured in an accident.
Life has no guarantees, and that includes that CF does not guarantee a life of pain. What CF does guarantee is that there is a group of parents experienced with CF waiting to welcome you into the CF family should your child have CF. It’s an incredible community.
We’re here if you want to talk, Lauren and Tim.