A Little Something Extra

Wednesday, October 7, 2009

Day 7 of 31 for 21 - Choosing Life

Thanks for asking another question, Paige. Here's her comment on an earlier post: "in utero - it's a dangerous place for a little baby with that diagnosis in this day & age... *what* - if anything - can we (as a society) do to change that? i guess what i'm asking is - how can we encourage parents to take the leap of faith required to choose life?"

Our society is on a slippery slope. The "termination" rate (aka abortion rate) for babies with a prenatal diagnosis of Down syndrome has been estimated at 91-93%. This has been termed "casual eugenics" by some. I think it's a sad sign of our society's priorities when it becomes more socially acceptable to abort a baby rather than put that baby up for adoption. And where will it stop? What if we get to a place of finding out at 15 weeks gestation that a baby will have autism? How "severe" will the autism be? Is that baby going to be aborted? What about advance notice that the child will develop cancer?

Paige, I think the first step is education. There are a lot of doctors out there who are sharing a diagnosis and presenting families with outdated and incorrect information. For example, a neonatologist told me (before Micah was born) that the average life expectancy of an individual with Down syndrome was 30 years. That might have been true 20 years ago when that doctor read a textbook, but it's not true anymore. It's more like 60 now! The difference is due primarily to advances in cardiac surgery, I believe.

The Kennedy-Brownback bill (The Pre- and Postnatally Diagnosed Condition Awareness Act) that was passed in 2008(?) can help. It was designed to improve information and increase referral support for families receiving a prenatal diagnosis. The key to making it work is funding it, though. I'm not sure where that stands right now.

Even though education can help, I'm afraid that the primary problem is that we all want what we want, when we want it. No one *plans* to have a child with a disability. We all have pictures in our minds of what our family is going to look like, maybe not to the last detail, like Nathan going to Michigan State, for example (I really don't care if he goes there or not, but I would definitely care if he said he wanted to go to Michigan... that's a subject for another time). I still struggle with expectations and unfulfilled dreams for Micah. I'm terribly selfish that way. I want Micah to be a statistical outlyer: he could drive, go to college, get married, etc. And as I've mentioned before, I need to continually go back to whether those dreams are for me and my benefit, or whether they're for him. Sorry... off track a bit here.

Back to the question. Another way to help is to let expectant mothers know that there is a long list of families who wish to adopt a baby with Down syndrome. There was a link floating around the Down syndrome community a few weeks ago showing a 3-month-old baby who was up for adoption. There were tons of inquiries about Ryan and he ended up with his forever family fairly quickly because they had a completed home study. I think it's very telling that there are a number of blogs I follow in which the family has a child with Down syndrome and has made the choice to adopt a child with Down syndrome, whether domestically or internationally (I might talk about Reece's Rainbow someday... head to their website for a major tug on your heart strings).

Here's a link to a recent news clip with Dr. Brian Skotko in Massachusetts. And here's the new parent packet put out by NDSS that just gives you some information. It would be great for all expectant parents to receive this when given a prenatal diagnosis. But it's very costly. Most hospitals do have some sort of information packet that they give out to families when a diagnosis is possible or confirmed. But who assembles it? That varies widely. And sometimes there's actually too much information (where do I start? what to read first?).

But maybe the best way to encourage families to choose life is to show them all the benefits that these children provide. And that though life is going to be different than we expected it to be, it will actually be richer because of this child. "Sons are a heritage from the Lord, children a reward from Him." (Psalm 127:3). Please take note: God does not say "perfect sons" or "perfect children" are a reward. Because really... who has perfect children anyway?


TUC said...

Excellent post!

The Josephs Family said...

Very well written Jennie! I'm enjoying all the new information I'm learning this month from you!

PS. How are Micah's new glasses?

Erin said...

Wow Jennie~
I really appreciated this blog. Thank you for sharing not only information but your heart as well.
With love ~ Erin

Jessica-MomForHim said...

Good post, well said.

I had to chuckle at your comment about Michigan and State...Ted was the only outlier in his family--both parents and his sister all went to State and he went to the U! ;-)

paige said...

Such a good post, jennie - just what i was hoping for.
i pray that as you keep standing up for Micah - & as you teach Micah to stand on his own - that hearts will be softened towards life.

Emily said...

Fabulous post! Great information!

Andrea said...

Beautifully written, Jennie. Even though Parker's special needs are different (CP) I can totally relate to what you are saying. Furthermore, what does it say to our kids about their worth and value if people are choosing to abort babies with special needs? It makes me cringe and grieve. Thanks for fighting the good fight, dear friend!

Angela said...

Oh, Jennie- I love this post. You and I are going to be fast friends, for sure. I couldn't possibly agree with you more in everything you wrote... beautiful.