Fighting for My Son with Cystic Fibrosis
https://www.thecut.com/2017/11/raising-child-with-cystic-fibrosis.html
Every Parent Wants to Protect Their Child. I Never Got the Chance.
Twice a day in our house, we turn on a projector that casts cartoon music videos on a blank stretch of wall. The songs are catchy and bright and usually keep our toddler captivated for the amount of time we need him to hold still. “There are no monsters who live in our home,” goes one of my favorites. “There’s only me and my family who live in our home / ’Cause there are no monsters that live here.” Up on the wall, two healthy-looking cartoon children learn not to be scared of the dark, while my son clutches my forearm and breathes dutifully into a mask. Sometimes he spots something familiar — an animal with a noise he can make, a color he knows how to say — and rushes to point it out, only to have his voice muffled by medical equipment. Unlike the home in the song, ours does have a monster, one that doesn’t hide under the bed or in the closet. Half of it lives in my husband’s DNA, half in mine. We’re still figuring out what the whole thing looks like, but we do know it’s coming for our son. In lots of ways, it’s already here.
In the most basic sense, this is why: Tag and I are both healthy carriers of mutations that cause the genetic disease cystic fibrosis. Dudley inherited two mutations, one from each of us, and this means he has the disease, which results from the body’s mishandling of chloride and sodium. On the outside, this means CF patients have extra-salty skin. On the inside, it means they have thick, sticky mucus in their lungs, pancreas, and other organs, leading to digestive problems and low weight gain, clogged airways and trapped bacteria. The excess mucus causes persistent lung infections, severely limiting patients’ abilities to breathe until, eventually, they no longer can. People who have CF must treat it vigilantly, with physical therapy to clear airways, inhaled medications, and fistfuls of pills. Doing so takes lots of money and staggering amounts of time.
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What would you do if your fetus was diagnosed in utero with a terminal or disabling disease such as cystic fibrosis?
I know what I would do.
I'm thankful that I never had to make that decision, Trout.
"My son has always had CF and always will." Being a glass is half full person myself I'm hoping that the author is wrong.
An Undeniable Hope: Recent CF Breakthroughs Show That a Cure Can Be Found.
Hopefully it will happen for her son since he is alive right now. I still wouldn't want to birth a child with this horrible disease.
If a cure can be found, then those with the genetic markers can take a chance on having children
This is not a hypothetical for my family. My sister and brother in law both carry the worst variant of the gene for CF. When my sister got pregnant (which was a huge surprise for them, since they both had fertility issues) with my nephew, they were unaware that they both had this gene. It was only after she got pregnant and they did blood tests on my sister and brother in law, that they found out about it. Then came the long wait for the amnio. Turned out that my nephew was just a carrier. But due to the variant she had her doctors counseled her to abort, if he had CF, since death occurs usually before the third birthday.
A number of years later, she got pregnant again. They got genetic testing on the fetus right away, worried about CF. It actually was even worse. The fetus had full trisomy 18, and scans showed that she had very only a brain stem. The doctors said to abort, since she would probably be a stillbirth or die shortly after birth. My sister had the abortion, but she was so heart broken that she actually put herself into a heart arrhythmia. She went to the local heart hospital, which happens to be a Catholic hospital. Once they stabilized her, a nun came to speak to her. The nun was so kind and told her that there was no person there, and that she had not sinned. Even though we are not Catholic, this was comforting to my sister, who is a very spiritual person.
My sister couldn't bare the idea of this happening again, so she adopted my niece from Russia.
Everyone needs to make these decisions for themselves, as well as possibly bring a child into the world to suffer daily.
Thanks Trout for posting this article. I don't think that people realize how horrible some of these genetic disease can be and don't really understand the horror of making these kinds of decisions, especially when the baby is wanted.
My heart breaks for your sister. Her story is so tragic. And I'm glad that nun came and talked to her the way she did.
I'm glad your sister is well now and happy with her daughter
Thanks Trout for your kind words. It was very kind of that nun and I think she made all the difference with her kindness and compassion.