cystic fibrosis

Should bad genes = no more kids? – Part 5: our choice

In our case, we have chosen to have another child. We have chosen to love this child. We have chosen to care for this child. And we have chosen to face whatever challenges come our way.

And, we will embrace technology to the extent that it can help. Medical research has gone a long way towards understanding cystic fibrosis. A cure remains elusive, but, I am optimistic that a cure will be found.

We look at Katie’s smiling face every day and in spite of the challenges that CF presents, we celebrate her life daily. I couldn’t imagine life without her. Similarly, a few weeks from now, I won’t be able to imagine our family without the new life that we are about to be blessed with.

So I ask again, what would you do? (please do offer comments)


cystic fibrosis

Should bad genes = no more kids? – Part 4: the larger ethical debate

And, when I think about the larger challenge of genetic testing, it makes me wonder where do we stop? In the very near future, genetic testing will provide each of us with a window into our “genetic flaws”. I foresee a day in the not so distant future when we’ll be given a printout after that newborn screening heel prick telling you what to expect in life. It’ll let you know what you might expect as you get older disease-wise, and it’ll also tell you what you might pass on to your children.

This has some serious implications for the next generation: will our kids pick their mates based on genetic makeup? Designer mates, designer babies, designer families.

There is some evidence that “carrier screening” is already making a difference: Carrier screening reduces CF birth rates in northeast Italy

This approach may breed out certain diseases, which would be fantastic. I am all for eradicating disease. But, what are the downsides to this? Are relationships being dissuaded based on genetic tests? Are families being prevented based on “the odds leaning towards an unfavourable genetic condition”?

I agree with the need to minimize disease, but if we based our decisions to procreate on risk factors, then I’d hazard a guess that nobody would have kids. Women in their 30s are at increased risk of having children with down syndrome. Some people lack sufficient financial security to properly feed, clothe and raise children. Pregnancy itself is not without risk. Maternal death is not uncommon in many parts of the world. Thus, the decision to have children in the face of scientific scrutiny is compelling.

I think we’re faced with a couple of options:

  1. We commit to breeding very clinically, leaving nothing to chance. In this case, we have an obligation to use science to intervene at all stages of risk, right back to the point where a couple first meet – I visualize n online dating site with genetic profile comparisons, thus ensuring that only “safe matches” are put together. Anything that deviates from that sterile, clinical decision making process is considered “unclean” or “flawed” and is therefore unsupported. So much for the mystery and magic of love; or
  2. We leave some things in God’s hands, accepting that which we cannot change and doing what we can to fix that which is broken. I am hopeful that finding a cure for CF means more than just “not having kids”.

Next up: Part 5 – our choice

cystic fibrosis

Should bad genes = no more kids? – Part 3: reaching out

We talked to other CF parents. One family we know decided to go ahead with more children despite the risks. Their next child was born with CF. They were plagued by feelings of guilt, pain and anguish but they, like us with Katie, have been comforted by the tremendous love, support and gifts that children bring.

We started reading. We stumbled across a blog post written by a guy in the US by the name of Ronnie “Sickboy” Sharpe. Ronnie has CF. He’s in his twenties. He blogs about CF at Ronnie’s post, entitled, Parents, would you roll the dice with CF? caught our eye. In that post, Ronnie explained the debate and he asked:

What would your decision be?

Would you have more children?

CFers, how would you feel if you knew your parents made that choice?

Any parents out there struggling with this very issue?

The comments were inspiring and comforting to us. Parents offered differing views. But what stood out the most were the comments from other CF patients. One comment stood out for me:

As a CFer, I would never say life isn’t worth living because of cystic fibrosis. EVERY LIFE is worth it and although it is difficult, it makes you a very strong person and gives the people around you a different take on life. I don’t think it is fair for anyone to have a sick child, but I think it opens up people’s eyes and touches a lot of lives when they do..and I think the world needs that perspective.

I face the same issues with having a child myself, although my husband is not a carrier, it means my child will be and the gene will continue on. But does that mean that I should be denied the chance to be a mother? I don’t think so. As long as you can love and care for a child, illness or not shouldn’t be a factor.

This captures the essence of it for me: “EVERY LIFE is worth it.”

Next up: Part 4 – the larger ethical debate

cystic fibrosis

Should bad genes = no more kids? – Part 2: our circumstances

Once Katie was diagnosed with CF, genetic testing was done to identify the defective genes that she adopted from Julie and I. In our case, Katie has the most common mutation, “double Delta F508”. This meant that Katie received the same defective gene from both of us, “delta F508”. Thus, Julie and I are both carriers of the problematic “delta F508” gene.

Noah was tested for CF as well. His sweat test result came back negative for CF. But, he has not been tested genetically yet. Like this discussion, there are ethical questions surrounding genetic testing in general. So, we’ve decided to let Noah make the decision to have further genetic testing when he’s older and understands the ethical issues involved.

When Katie was first diagnosed, we immediately thought that we’d never have more children. This was difficult to accept because we had long thought that we would have a third child. But, for the first few months, we simply accepted the fact that we would not have more children due to the increased risk of CF with subsequent children.

But over time, as we learned to accept CF in our family, we started getting back to a normal family routine. Part of this routine included discussing our options for a third child. We had several options to consider:

  • adoption
  • in vitro fertilization
  • surrogate carrier
  • natural conception
  • simply stop at 2 kids
  • other – I’m sure I’m missing some options

As we considered the options, cost, timing, effort involved and ethical considerations conspired against us.

We didn’t have the money to pursue some of the options: IVF looks like a $10K+ undertaking. And, IVF has some ethical considerations as well. What do we do with the leftover embryos, for example? We weren’t comfortable with the destruction, freezing or donation of unused embryos.

We didn’t feel ready to consider adoption.

And, we weren’t comfortable with having a surrogate carrier.

So… our options were limited. We weren’t quite sure what to do.

Next up: Part 3 – reaching out

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