cystic fibrosis

Should bad genes = no more kids? – Part 1: background

We are expecting our third child any day now. This is an exciting time for us. And, for a while, it was a difficult time as well. Why? Because the odds are 1 in 4 that this baby will be born with Cystic Fibrosis.

Some would consider us reckless or ignorant. Others would call us brave or compassionate. And others may think that we are simply crazy.

But I ask… what would you do?

First of all, here’s the science behind this debate:
Cystic fibrosis, a genetic disorder, is present from birth. CF occurs when a child inherits two defective copies of the gene responsible for CF, one from each parent.

Approximately one in 25 Canadians is a CF carrier, carrying only one defective version of the gene responsible for cystic fibrosis. Carriers do not have, and can never get, cystic fibrosis. In most cases, they are not even aware they are carriers.

When two carriers have a child, there is a

  • 25% chance the child will be born with cystic fibrosis
  • 50% chance the child will not have CF, but will be a carrier
  • 25% chance the child will not have CF and will not be a carrier

With each pregnancy, the risks are exactly the same. Two carrier parents may have several children with cystic fibrosis or none at all.

Thanks to the Canadian Cystic Fibrosis Foundation for the above info. source)

Next up: Part 2 – our circumstances

By Todd Dow

Author, Geek, CF fundraiser & Cancer Survivor. My family, baseball, infosec, privacy & devops are a few of my favorite things.

3 replies on “Should bad genes = no more kids? – Part 1: background”

Now that infant screening is a part of having a baby right from birth, that means less children are getting so sick and close to death before given a diagnosis. Now treatments start right away and will help with preventing things such as bowel obstructions, prolapsed rectums and so forth. Each person needs to make the decision for themselves. You are wonderful, loving people who will be able to deal with whatever is thrown your way. Good luck and congrats guys!!!!The Whaley's

Todd, I would do the same as you. Currently, you have 2 children. One who is perfectly normal and the second one with this horrible disease. Some people would say "that's a 50% chance", but if you had 4 kids (like me) and only one of them had this horrible disease, people would look at the situation differently and say that the new baby may have a 25% chance. Don't worry what people think and comments that are made. Enjoy your family and your new baby. You are right, life goes on and we all must look on the positive side.I have been following your articles. They are excellent, and honestly, doctors tend to not tell you everything until it happens, which is wrong. My second son was going through a period of time where they thought (but didn't tell me) that he had Lymph gland cancer at the age of 3. It turned out that it wasn't, but doctors should be forced to tell you what to expect. Right now, you have given the signs, your visits at the clinics, your whole experience, etc., but the future is blind to you and Julie. You are opening the door to anyone that may or will go through this in the future and that is very brave.My heart goes to you, Julie and your family. Katie is a beautiful little girl and will become a beautiful lady.Debra StarrXXPS Can't wait to see some pic of the new baby!

In our situation we started going through the testing with our son 2 months after finding out we were expecting #2. It was a very touchy subject for us and we were facing the same issues if Liam was diagnosed positive for CF. In our minds, considering the great strides in genetic therapy and stem cell research, we would continue with pregnancy #2 and have decided to bank cord blood in the chance that it could be of use at a later time to help find a cure or treat the disease.

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