NY Times.com: Feb 3
Ethics questions arise as genetic testing of embryos increases
This article, as well as another related article on CNN.com (March 24), ran just this year and are obviously hot topics. Remember the saying, "Where there is smoke, there must be fire." Well, where there are hot topics, there must be a debate. This particular subject is no exception: to discard or not to discard, that is the question ~
The process of testing an embryo for a disease before it is actually implanted in the uterus is known as Preimplantation Genetic Diagnosis (PGD). The only way to actually perform this process is through In Vitro Fertilization (IVF). Here's the deal, PGD has nothing to do with infertility. It is a procedure that a family and their doctor elect to become a part of because of a disease that they want to protect their unborn from inheriting.
You may be asking yourself how I seem to know so much about this and why I would be dedicating a post on my blog to it? Before I answer, I warned you in a previous post to be careful when asking a mother whether or not her child/children are natural because you might not be prepared for the answer...here's why:
The NY Times article could have been written about me because I share the same story. My twins are here because of IVF with PGD and guess what? They will not inherit the disease that I tested positive for. My husband and I made a decision to protect our future children from this disease because it is dominant and has a 50% pass rate. That means that the fate of my children inheriting this disease was a literal coin toss. We weren't ok with those odds.
My story, as opposed to the family featured in the NY Times article, was a little more dramatic and had an interesting twist of fate. I am going to spare you most of the details pertaining to the process of IVF and PGD and just jump right to the end - I found myself in the hospital after having over 30 eggs removed from my very swollen ovaries. After a few days of deteriorating health, I was admitted for being severely dehydrated and for having ovaries five times their original size.
While I was hospitalized, my IVF doctor explained that they had sent about 17 cells to Detroit for testing. Depending on the results, two healthy embryos would be inserted into my uterus for implantation and the rest would be cryopreserved (frozen). However, due to my level of illness, he suggested that I wait about four months, until I was healthier. I promptly burst into tears - I felt as though we had been through so much up to that point and having to wait seemed like an emotional hell. I wanted to move forward.
It turns out, a greater force was exerting an influence and my doctor returned the next day, looking solemn. He sat on the bed and looked at me with great sadness in his eyes as he explained that the test results had returned and out of 17, all but three tested positive for the gene. I was horrified because at that moment, even though I knew I was a carrier, it wasn't real until I was told that I had actually passed this gene to almost all of the healthy embryos we had available.
As if that wasn't bad enough, out of the three that were "healthy", one was graded as excellent, one was good and the last was iffy. His instructions were to leave the hospital and drive directly to his office for insertion - we couldn't take a risk of cryopreserving them and then they not be viable when we needed them in the future.
But what were we supposed to do with the other embryos that tested positive for the gene? This is the hotly debated issue related to this process.
We chose to donate them to the research organization that supports the disease I have. We felt good knowing that they would serve a purpose that would help so many people in the long run. However, not everyone feels we did the right thing.
Some say that we are interfering in God's work by taking part in IVF and PGD. Others have a great deal of opinions as to what they feel should have been done to the embryos that tested positive for the gene.
In the end, the "excellent" and "good" embryos were inserted (the iffy one never progressed) and 38 weeks later, my twins were born. We can't control for all circumstances or all diseases - who knows what will happen? What we do know is that neither of them will have this disease and that, I can live with.
My opinion as someone who has been through it: I couldn't go into motherhood knowing that I was putting my children at that much risk. I felt it was irresponsible of me not to do anything about it. I also feel as though if everyone could afford it and was able to physically endure IVF and PGD, this disease and others would essentially be cured. We would be ensuring a future without these diseases.
In regards to the PGD process as a debate, if you take birth control or even prenatal vitamins, you are manipulating the process (or "interfering" as some would say). You aren't a bad person because you are trying to prevent an unwanted pregnancy or because you are trying to ensure the health of your unborn child...so why am I a bad person for preventing a life-altering disease that I know I carry and will eventually have to live with?
On another note, what are we supposed to do with the embryos that test positive? Keep them and freeze them? What good would that do? In order to influence a greater good, there will be loss along the way. It is unfortunate but it is what it is.
Our twist of fate really puts things into perspective:
I had over 30 mature eggs removed from my body. Through the process (and in just five days) some of them did not progress, some of them did not become embryos and some of them tested positive for the gene. We were literally left with TWO. We could not have afforded another cycle of IVF and we assumed we would have some left to preserve. We never dreamed that it would all come down to just two - there was not a plan B, it had to work...and it did.
We have a beautiful set of twins, girl and boy, that implanted and grew, progressed through 38 weeks of pregnancy and entered this world via a planned C-section. They did not require NICU care, they are healthy and they will not have the disease that I carry...it's a true miracle.
The question is: what would you do?
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