When Greg and I met with our first RE in January 2016, the consultation ended with both of us having our blood drawn. Standard procedure, I believe. But in addition to running the usual endocrine panel, we were asked — actually, encouraged — to also give samples for testing by an outside laboratory, called Recombine, which would perform a full genetic screening. This added test came with a steep added cost, $99 per person, but we agreed to it because, even though we were TTC newbies, it seemed like an important and worthwhile thing to do.
Of course, we didn’t anticipate negative results. But two weeks later, Recombine called with the news, and we were dumbfounded, to say the least. The lab screens for more than 300 genetic diseases that you may potentially pass down to your future children, and it found that Greg and I both carry copies of a gene that give us a 25% chance of having a child with mild to severe hearing loss.
While we have been relatively open with our struggles to conceive, particularly since starting this blog last month, we’ve only shared this information with family. Partly because it is quite personal and mostly because it isn’t a certainty that we will have a deaf child. (Flipping the statistic feels much better, we have a 75% chance of having a hearing child.) But also, if I’m being honest, we didn’t share because we really didn’t want to remember this bit of knowledge that we had learned through the testing of our blood.
During that phone call, we were too shocked to cry. We were just trying to take it all in and understand. The crying came later, for me anyway. Greg and I talked through the different scenarios and possible options, as well as how we felt about the potential of having a child with a disability. At the time we weren’t financially ready for IVF, so it was easier to make the decision: We wouldn’t pursue genetic testing of our embryos to determine if they were affected. We would take the risk of not knowing.
Weeks ago, we signed the required consent forms to start IVF, with one of those forms addressing pre-implantation genetic diagnosis (PGD). We initialed that we had already been screened ourselves and would not be testing our embryos. But, to our current RE’s credit, she reached out to us yesterday to confirm that we understood our options and our risk. We are days away from starting IVF and she wanted to be sure — sure that we knew our odds and that, while the condition isn’t life threatening, deafness would “have an impact on quality of life.”
Reading those words is so hard. It’s a punch in the gut to even think about your baby having medical problems from birth. And I started to wonder, are we being selfish? Is PGD the right thing to do? Yes, it will add about $5,000 to the cost of IVF and yes, it will delay the transfer (going from a fresh cycle to a frozen embryo transfer), but is it worth it? As good parents, should we spare our child from pain and suffering if we have the ability to do so? Do we have a responsibility to stop this genetic disease in its tracks? Because even if our child isn’t affected, they could end up being a carrier, too.
And yet, at what point do you stop relying on science and instead lean on faith?
I don’t have that many eggs. We are not expected to make that many embryos. What if we only have one good blastocyst, we test it, and it has nonsyndromic hearing loss? Greg and I both agreed we wouldn’t feel right about “tossing out” an affected embryo.
I sobbed when I said this to Greg and my eyes are welling up now: That embryo is our baby. It deserves a chance to live.
If we weren’t struggling with infertility, if we didn’t need to use IVF, we would never have known about our 1 in 4 chance. We would have been like every other blissfully ignorant couple that gets pregnant in the bedroom and imagines a perfectly healthy baby for themselves. And in this idyllic circumstance, if I never gave birth to a deaf child, then we would continue on living our lives never knowing the risk we faced, and overcame.
They say that sometimes you just have to let go and let God. So after another lengthy talk that ended with tear-stained cheeks, we have again decided to ignore our fears and walk into the unknown. As I wrote in my reply to our doctor, we are going to move forward with hope and faith... and accept whatever path God has planned for us as parents.
Whether our embryos are affected or not, it doesn’t matter. As Greg said to me, with words that will forever be emblazoned upon my heart: “I’d love them all. They’re our kids.”
No comments:
Post a Comment