Omega and Alpha

by Kathy on February 24, 2010 · 7 comments

in Abby, Bob, CHD, Frozen Embryos, Molly, Quotes, Sean, The Future

If you have been watching the Winter Olympics in Vancouver, Canada on television over the past two weeks, as Bob and I have been most nights, you may have noticed during many of the events that when the athletes have completed an event (whether timed, judged or both), that a red bar shows up on the bottom of the screen with the last letter of the Greek alphabet (a horse shoe symbol) and the word for that letter “Omega.” I keep noticing it during different events and it has struck me for some reason.

In addition to watching Olympic hockey, skating, skiing and snowboarding, last week Bob and I met with a Pediatric Geneticist, that our children’s’ pediatrician kindly referred us to. This genetic specialist had spent a lot of time prior to our appointment reviewing our history, especially that of our daughter Molly’s diagnosis and post-mortem (autopsy) report. The purpose of the meeting, or so we thought, was to get the doctor’s take on whether or not it makes sense for us to consider trying again someday with the three remaining frozen embryos we have from our unsuccessful IVF cycles in 2007.

However, as it turned out the focus ended up be more so on the ways Molly might have ended up with the rare and severe combination of Congenital Heart Defects (CHD) that she had, along with Laterality (a.k.a. situs inversus, heterotaxy, left atrial isomerism, polysplenia, etc.) and how that impacts the “odds” (there’s that term again) that any future children we might be able to have could have what Molly did, in some form.

The bottom line that we took away from the meeting is that we think we would be “gambling” and relatively irresponsible, especially in light of the fact that we have two healthy children to love and care for already, to try again with or without the frozen embryos. Thus we find ourselves at an Omega in our life.

For a number of reasons prior to this meeting Bob and I had been leaning against trying to have more children with or without our frozen embryos. We feel very blessed and lucky to have our two healthy living children and believe the time might be right for us to move on with our lives and focus our time, energy and resources on giving Sean and Abby the best life we can. That said, it is one thing to come to that decision on our own and felt very different to me last week when I was under the impression that someone else, the Pediatric Geneticist, was discouraging us from going down that road again.

The doctor we met with explained everything to us in great detail. She was able to help us understand the various factors that might have contributed to Molly’s fetal anomalies that led to her death. These factors can be genetic or multifactorial, though not necessarily chromosomal (as Molly was found not to have any chromosomal abnormalities, at least ones that can be tested for/the medical community is aware of at this time). If there were genetic factors involved, the anomalies could have been caused by genetic mutations that either Bob, I or both of us may be carriers of that together or on their own could have caused Molly’s conditions.

Reviewing some basic biology, which the pediatric geneticist did with us that day, genetic mutations can be passed on to a child in two main ways: through dominant genes and recessive genes. Usually we think about this as it relates to fun things we “give” our kids such as eye or hair color. However, in this instance, it also can greatly impact the health of our children (including preconceived and unborn children). As the doctor explained to us at our meeting, the odds (which we can never truly know what they are for us) depend on how Molly got the Laterality combined with Congenital Heart Defects (CHD).

If it was through a Dominant mutated gene (from Bob or me) our odds in having another child with it in some form (worst case scenario as rare and severe as Molly had it) are 50%. If it was through a Recessive mutated gene (of which Bob and I would both have to be carriers) the odds would be 25%. Here is a helpful article I found that explains Laterality Sequence in great detail: http://www.healthline.com/galecontent/laterality-sequence

The doctor we met with also discussed with us that even if you take the possibility of dominant or recessive mutated genes causing the anomalies Molly had off the table, our odds of having another child with CHD is still significant, about 3 – 5 %, possibly as high as 8%, but “definitely less than 10%.” Though those odds may not sound as daunting, as a 1 in 2 chance or a 1 in 4 chance, even a 3 – 5 % chance is something we don’t think we want to gamble with. A 5 – 10 %, being 1 in 10 to 1 in 20, is still a very significant chance to us. Again, all of these odds lead Bob and me to believe that it would be “gambling” and fairly irresponsible after all we have been through to try again.

It might be different if Molly had been our only child and we really wanted to have a living biological child. However, even then adoption might have been the better option for us to try (as I know many of you reading this have chosen to pursue and/or have built your families through and I so admire you doing so). All this said, we feel incredibly blessed and lucky to have two healthy children and are leaning strongly towards “quitting while we are ahead” and making the most of our life going forward with what we have (Sean and Abigail are amazing) and not trying to have more.

We also are grateful, in retrospect, that we didn’t have this meeting and learn all of this information before we allowed ourselves to be open to life at the time we were somehow able to conceive Abby, as we might not have allowed that to happen otherwise. Also, if we had known more of these details and statistics after her conception, it might have made our pregnancy with her even more stressful. That said, as you may recall, we really didn’t believe we could have more children without medical assistance at the time we conceived Abby. So though we knew it was an unlikely possibility, we were beyond surprised when it happened, though we were “trying.”

After all we have been through over the past seven years trying to build/expand our family, making a decision to move on is not easy, but it is also in some ways a relief and though it is a “soft” decision at this point and not final, we are certainly leaning strongly in that direction. As you can see I am still very much processing it all this and it will take some time to sink in fully.

As I mentioned earlier, I didn’t expect the news we received to be the main outcome/take away from our consultation with the doctor. I thought the main focus was to discuss whether or not to go forward with the frozen embryos and why or why not, which we did address, but that was the least of the importance/focus in the end. The Pediatric Geneticist indicated that she didn’t think the odds of Molly’s anomalies, or some lesser version of them, reoccurring in one of the three frozen embryos were significantly higher than if we were able to conceive again on our own with out medical assistance. However, after what we had already learned about the odds related to any future children we might be able to have, just because there is a possibility that we could, doesn’t mean that we believe that we should.

As for the fate of our three frozen embryos, it is not something we take lightly, hence the initial purpose of this meeting. Our leaning there at this point is to donate them for stem cell research, which hopefully some good could come from and their creation and existence will not be in vain. I have been in contact with the clinic that we worked with in 2007, that is storing our frozen embryos for us, and found out that they work with a highly acclaimed university in the Midwest that would welcome our donation. We are in the process of requesting more information and the paperwork to move forward with this option, which we look forward to reviewing before we decide for sure.

As much as this is likely a big Omega in our life, I also see it in many ways a beginning (or an “Alpha,” the first letter of the Greek alphabet). It is a time for us to live our life for what it is and though we still intend to plan for our future, as it relates to goals for our life and our family, it is becoming clear to us that it is unlikely that future has (or should have) any more biological children in it for us/our family and we are comfortable with that vision.

This situation calls to mind one of my favorite quotes that I found a few years back on a decorative rock at gift shop in Michigan:

Happy people don’t necessarily have everything,
they just make the most of everything they have.

This really speaks to me right now, as does the Conan O’Brien quote I recently shared:

Nobody in life gets exactly what they thought they were going to get.
But if you work hard and you’re kind, amazing things will happen!

Ironically we met with the Pediatric Geneticist on Ash Wednesday, the first day of the Lenten season in Christian church communities around the world, including our Catholic one here on the southwest side of Chicago. When I reflect on what Ash Wednesday and Lent represents to me and our faith, it seems fitting that we would have received this news and be discerning this decision in our lives during this time in the liturgical year.

Our meeting also happened to take place on the 17th day of February, the day which our daughter Abigail turned 5 months old and our daughter Molly would have been 22 months old. As you know it doesn’t take much for me to read into things and find symbolism, so it also seemed fitting that we came to this crossroads in our life on that date.

Thank you for reading and for your continued love, support, thoughts and prayers. I hope this finds you and your loved ones in good spirits and staying warm and cozy this winter season. And last, but not least…

GO TEAM USA!!!

P.S. A funny note about the title/inspiration for this post…

After I first composed this post, I sat on it for awhile, as I wasn’t sure if I was ready to put it out here just yet. In the meantime I happened to be watching an episode of Access Hollywood (one of my guilty pleasures) and saw a segment on Olympic swimmer Michael Phelps’s visit to Vancouver as part of his contract with the “official time keeper (a sponsor) of the 2010 Winter Olympics.” I didn’t know there was such a thing, but apparently there is and that time keeper is a watch maker/company/brand, that I had never heard of, called (you may have guessed this by now or knew about it already) “Omega.”

So while I was under the impression that NBC had put that Omega sign and word on the screen to indicate when a timed event was complete, to be creative and/or as a nod to the Greeks/the original Olympic hosts, it turns out Omega is actually a sponsor of the Olympics and the word/symbol is there to promote their company/product/brand! Go figure…

{ 6 comments… read them below or add one }

1 Martha February 25, 2010 at 12:41 pm

Blessings to you and Bob as you enjoy and raise your beautiful children to be happy, caring adults.
Thank you so much for visit, I know you have been busy w/your family.
Send my best wishes, Martha

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2 Tash February 26, 2010 at 10:50 am

I'm sorry the meeting was so discouraging, but it sounds as though you've made great peace with it — which is pretty much all one can do. Facing an unknown possible genetic problem ourselves, I know how daunting that high end of 1:4 can be. In order to make peace with what I felt I needed to do, I had to let it go. I embraced the basic law of probability stripped of odds: Either something will happen, or it won't. And soon we'll find out whether this gamble was a colossal mistake, or not.

Hoping to find peace as with you someday myself. Best to all of you, and thinking of Molly, mightily.

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3 areyoukiddingme February 26, 2010 at 10:56 am

A girl from the Southwest side of Chicago, stopping by (via Stirrup Queen's Friday Blog Roundup) to say that it takes courage to let go. Most people think that the courageous are those who take risks, but there is a lot of courage in turning away from things you want too. Much luck, and enjoy your beautiful children.

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4 Alexicographer February 26, 2010 at 2:07 pm

Here from Stirrup Queens — what a beautiful post.

Early in my journey to have children, and not loving after explaining at length to a friend how I envisioned moving pretty quickly to adoption, a doctor told me (wrongly as it turned out) that I wouldn't be able to get pregnant using my eggs. It was at that moment — and the weeks that followed it — that just how strong my desire was to have a child genetically related to me hit me. Yes, there is a huge difference between making (or contemplating, in my case) a decision yourself, and being told you "should," or "must."

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5 Kristin February 27, 2010 at 8:02 am

What a tough situation to be in. I hope your ultimate decision brings you peace in the long run.

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6 Lavender Luz November 15, 2011 at 2:39 pm

Once again, you are juxtaposing two opposites and finding the unity in them. I LOVE when you do that!

I had never thought about facing the decisions you are facing. Or were facing, since I am here from the future of Time Warp Tuesdays.

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