Friday, December 14, 2012

Genetic Screening Update

I just want to acknowledge that writing this post was difficult. I've re-read it several times and have considered not publishing it. I don't feel proud of myself when I admit that one of the reasons we opted for genetic screening this time around is that having a second baby is going to push us to capacity.

But I can only be who I am. I am always striving to grow and evolve as a person, but I am who I am. As someone who publishes my thoughts in a public forum, I feel it is my obligation to share those thoughts honestly. 

Thank you, Dear Universe, for another opportunity to bring new life into this world. 

The results from our nuchal screening came back all clear!

As I signed in for my appointment, I asked clarifying questions about what our insurance would cover. She said, "Well, you have AMA, so the chances are good that it will be covered." I responded with, "I don't have AMA; I have Blue Cross Blue Shield." 

She clarified, "AMA means 'Advanced Maternal Age.'"

Oh. Then I remembered that the doctors count how old you'll be when you deliver the baby, not how old you are when you conceive. 

The risk for abnormalities skyrockets after the age of 35. I wish that weren't the case. I wish our minds could take the lead on when our best time for fertility is, based on where we are in life. Staring at the statistics with the genetic counselor was very, very frightening. 

With Henry, we opted not to do any testing. Even though I completely support a woman's right to choose, I didn't think I could bring myself to "choose" what kind of baby could live and what kind of baby could die (especially because our bodies are so good at deciding for us, which is why the rate of miscarriage is so high). 

A good friend of mine followed the same path. I remember hearing that she was getting screened with the second baby (when she hadn't for the first). I remember being struck my what felt like unfairness. Why was the first baby going to be accepted no matter what but the second baby had to be screened? 

And then I was in the same position. And I understood better.

Bringing a second baby into our family is going to push us to the very edge of our capacity. Matt and I struggled for the first 16 months of Henry's life to get the joy the outweigh the difficulty. We are not kidding ourselves about how hard it will be the second time around. Of course some things will be easier (we won't second guess ourselves so much, we won't worry about as many things, etc.), but we'll have to meet the baby's needs alongside a toddler's needs (and our needs!). 

There is so much that is out of our control. Even thinking about all the possible things that could go wrong on a given day and change our lives forever overwhelms me. So this time around, screening felt like one piece that was in our control. 

We did not reach our decision lightly. It involved lots of conversations with lots of different friends and family members. It involved lots of research. 

I think it's one of those things we need to talk about more. We need to bring it out of the shadows. I know it's hard to do because the risk for judgement and condemnation is so high. 

But it's one of those major life decisions we face. The lack of conversation around it makes it even more isolating and lonely.

I am counting my lucky stars that we got the best possible outcome. We opted for the earliest screen (which can have false positives which leads to more worry/stress/weeks of waiting) and we got the best possible news. I am flooded with gratitude.

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Sara said...

Sara, you and Matt and Henry and the little one on the way have to do what is right for your individual situation and your individual family.

I wanted to share our experience: before our son was born in June, we had to visit growth specialists because our son's ultrasounds showed that he had shorter limbs than average. Because my husband - his daddy - is on the short side and had to endure growth hormone injections as a child, these findings didn't surprise us, but it was still a time of great worry and anxiety, because we didn't know if our boy was just going to be on the short side, or if he had some sort of serious growth disorder. We now know that there is a genetic likelihood that we will have (perfectly healthy, thank goodness) shorter children.

Thank you for your honesty, as always!

Megan said...

Ugh! AMA. Advanced Maternal Age. I don't feel advanced! I feel young! I agree wholeheartedly that I wish our minds could take the lead. I will be 37 when I have my first child, and you are right the statistics are scary. But this is how life has turned out. And we do what we have to do, and make the best of it. Thank you for sharing, and your honesty. The best to all of you!

Chloe Nelson said...

Thank you for your honesty, Sara! I commend your bravery for many of the personal moments and revelations that you share with us. You have seriously encouraged and inspired me in so many ways.

Maureen said...

Fantastic news!! I think that the genetic screening was by far the scariest part of pregnancy. Thanks so much for your honesty and sharing your experience. And congratulations!

Alissa said...

Hi Sara, Thank you for sharing your experience. I have a question about genetic screening. My husband and I are planning to start trying to conceive in the next year or so. Did your midwife let you know what genetic screening was available and when, or did you have to research it on your own?

ckmb said...

It's good to remember that sometimes people do screenings to be prepared for potential complications, health issues, etc. It doesn't have to be about whether or not you "accept" the baby no matter what; parents may simply want to be informed and embrace what's ahead of them. No one should judge any such personal decisions.

Sarah said...

You made a great decision, in my view. Congratulations on the all clear!

laura said...

@Alissa my experience (I'm pregnant with my first right now, 19 weeks) is that these tests are prescribed for certain times in your pregnancy (e.g. nuchal translucency at 12 weeks, the full measurement of the fetus's limbs etc at 18 weeks) so your midwife will definitely tell you about it when it's time, usually the appointment the month before, so you have time to decide. They also sometimes offer you other testing too depending on your family history (Tay-Sachs, etc).

And Sara - I'm so happy to hear you had normal results. I felt the EXACT same way about undergoing testing myself. I felt guilty when I considered the "what if.."s. Seeing the baby moving on the ultrasound, I just couldn't imagine terminating, even though I am staunchly pro-choice and always figured I would if I had had a negative result. Thankfully, that didn't happen.

Carrie said...

We had all the tests offered by my OB with both pregnancies. Everyone I know had them. I think it depends on what circles you run in as to how much you are likely to agonize over the "whether to" decision. Don't beat yourself up. We never even talked about the "what ifs". We looked at it as gathering data/info about our babies. There is no way in hell I would want to give birth to a baby with Down's or another condition with zero preparation for that occurrence, no medical treatment and services lined up, no counseling for me, etc. It seemed wise to know whatever the case was. All was fine with both boys, and I don't regret testing whatsoever.

Ceka said...

I'm so glad you posted this. This is something I struggle with too, and I'm not even pregnant yet. I worry that, if I screen and get bad news, my sister will never forgive me if I terminate the pregnancy and that my FIL will pressure me to terminate. There's not a lot of space for me to think through things carefully without outside pressure.

It really helps to see someone working through these dilemmas honestly and non judgmentally. Thank you.

Alissa said...

@ laura - Thank you for the info, and best regards with your pregnancy!

Anthropolochic said...

I appreciate your honesty on this issue. We screened for our new little one. I was - this will sound odd - but excited or eager to screen. I work in immunogenetics, I teach college courses on human variation. I work down the hall from a neonate cytogenetics unit. I think about these sorts of variations in human physiology all the time. I am in mt mid-late 30s. Any child of mine is at higher risk for detrimental variations.

That said, I was eager to screen because I simply wanted to know. My husband and I disagreed on what the outcome should be if the child was positive for a considerable chromosomal defect. I always intended to bring the baby to term (though in the cases of some trisomies, I realize that my input might not matter at all and the pregnancy might self-terminate)....but it mattered to me that we be informed, prepared for what may be ahead of all three of us. It wasn't, for me, about acceptance of the child but for laying the groundwork for the best possible life for the child regardless of test outcome. Even when the screening was clean I worried about what might not be seen. I really just wanted to provide the best for her.

She was born two weeks ago today, lovely and wonderful. Oddly, she actually has a small developmental "defect" - small pharyngeal pouch anomaly that only I and the pediatrician would notice. A minor variation, with no quality of life impact and that couldn't have been screened for anyway.

Over the course of the pregnancy I kept pretty mum about my thoughts on testing because the only other opinion that mattered to me was my husband's. I didn't want direct input from others. That said, I was curious and screened pregnancy chat forums etc. for thoughts. I had difficulty determining other writers' motivations for screening/not screening. It's a touchy subject for a lot of parents I think. It's also hard to start an honest conversation about it with someone you don't know. So it was very, very nice to see your thoughts written here. It gives me perspective on my own thoughts and decisions.

Crystal Rhew Staley said...

I've been reading your blog for a while now and have not commented before now, but I feel compelled to tell my story. I gave birth back in June to my first child, my wonderful son Baxter--I was 34. I did have the preliminary blood test (forgetting what it's called at the moment) which showed nothing outstanding at the time so my husband and I (who is 39) opted not to have any further testing done (amnio, etc) because of the risk for miscarriage. However, after he was born, it was determined that he has Down Syndrome. We were devastated and heartbroken at the time because the dream of our 'perfect' child was shattered. He is almost 6 months old now, and of course I couldn't imagine my life without him and I feel such guilt knowing that I would have chosen to abort had we got a positive prenatal diagnosis. It will haunt me the rest of my life probably. But I look at my baby, he is healthy and happy and I honestly couldn't ask for a better baby, because he is not his diagnosis, he is not his Down syndrome---he is a baby just like any baby. Sure it's not what I was hoping for, it's a different journey I'm on, but it's my life now and my husband and I have accepted that our path has changed course. I still am very much pro-choice and would never judge a woman for choosing to abort after genetic testing. We are very lucky that Baxter does not have major medical issues, other babies with Down syndrome are not as fortunate. So every day, I am thankful that he is healthy and with early-intervention programs he is getting help he needs to reach his full potential. I still have the same goals for Baxter including college and marriage and with the programs that are available now for children with special needs, I know that he will have those opportunities. I hope I've not rambled but I just felt that I should add something here. Congratulations on your new little one. I look forward to reading about him/her just as I have with Henry!

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