Month: May 2010

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 runsickboyrun.blogspot.com. 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

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

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