Thursday, February 2, 2012

Dodging a bullet others are bearing with grace

I loved being pregnant, but unlike most pregnant women who anticipate ultrasounds with joy (and post photos on Facebook nowadays!), I dreaded them. When I was pregnant with Chris, I had multiple ultrasounds because they were trying to detect why I was bleeding so much. After that, I had many ultrasounds with unfeeling techs (or my reproductive endocrinologist, once) who failed to detect a heartbeat and had absolutely no compassion or sensitivity to how I might feel upon discovering that my baby was dead. Even after having a full-term baby, I still didn't like ultrasounds.

So it was with some anxiety that I approached our ultrasound appointment when I was pregnant with Nicholas. Secretly, I hoped to discover we were having a girl, but had elected to find out the gender in advance so I wouldn't have any shred of disappointment when he was born. At that appointment, we found out he was a boy...and we also discovered that he carried a soft marker for Trisomy 18. I can't even remember what that marker was, but I cannot forget meeting with the doom-and-gloom perinatologist after the ultrasound and hearing his recommendation that we have an amnio.

We had elected not to have an amnio, even though I was 41, because of the increased chance of miscarriage or premature birth. We also didn't want to be faced with a difficult decision if the amnio brought bad news. The doctor was not my usual doctor, and he was brusque and dispassionate. We returned home, with me in tears and right to the internet to look up more information and debate whether to indeed have an amnio. Knowing we were having a boy was of course completely unimportant...all that mattered was having a healthy baby. By the time we returned for an appointment with my beloved perinatologist, we had decided not to have the amnio, and he completely understood and seemed to agree with our decision. And as you all know, Nicholas is fine, and I love the fact that he's our third boy. Sometimes I think we have way too much medical information.

A healthy Nicholas at birth
All these memories came to the forefront as I read this touching story about a woman with a son, Zane, who has Trisomy 18. The doctors told Susan Hatfield that Zane would not live, but he's made it to five years old...nothing short of a miracle. Trisomy 18 is more in the public realm at the moment because of Rick Santorum's daughter (makes it very hard to understand how he could tell a sick child and his mom that drug companies were entitled to charge whatever exorbitant prices they decide to!!).

Hatfield writes about the people who wrote her son off and didn't think he was worth treating, and reflects that "everyone, regardless of genetic makeup, ability, or disability, should be treated with kindness and compassion, especially when their lives are so limited."


Ninety-five percent of babies with Trisomy 18 do not live beyond a week. Hatfield knows that her son's time might be limited, but "Zane is a living example of how the medical community is not the end-all of knowledge." While she appreciated the honesty about the statistics assocated with the genetic disorder, she also faced anxiety and hopelessness because they were all so sure they knew what would happen.

After our 117 days in the NICU, I can sure relate to that.

4 comments:

  1. My first born was three months premature, so with my second, I had tons of ultra sounds. I really got to hate them by the end. I had fewer with #3, but they will have me in more times than for most moms.

    I have a friend who was told her son wouldn't live to two because of a benign tumor on his brain. He's now eleven. He's struggles with a lot of things, but he's smart.

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  2. Hi Marie,

    Thank you for commenting on Zane's blog and enabling me to find you. I am so sorry for what you had to go through. I will never understand some doctors' callous behaviors and attitudes. We are so lucky now to have a team of medical professionals who cares for Zane with compassion. I appreciate you sharing the article and look forward to getting to know you better.
    Susan

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  3. Stina, I'm glad you can relate and also glad your friend's son has survived!

    Susan, I'm so glad to have discovered you. Thanks for sharing your moving story!

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  4. Hey Marie! Wow! What a small world, indeed. I follow Michael's writing blog. He is wonderful. You both are!!!!

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