Disbelief, anger, sadness, compassion

March 24th, 2010

I have a lot of experience with being pregnant.  Along with many other mothers, I learned quickly that a pregnant belly is a conversation-starter.  I’m not one who has ever minded that.  It usually goes something like this~

Them:  “Do you know if you’re having a boy or a girl?”

Me:  “We’ll be excited about either one!”

Them:  “As long as it’s healthy, right?”

Now, I know they have no idea of the logical implications of this statement.  But note that they don’t say, “I’m sure you hope that they’re healthy.”  I could agree with this.  Of course parents hope that their baby is healthy.   But “as long as they are healthy?”  As long as they are healthy, then what?  In English grammar, this is called a sentence fragment.  Finish the sentence.

As long as they are healthy, we will be happy to have them in our family?  As long as they are healthy, we will see them as a gift to be loved?  As long as they are healthy, we will not abort them?  And……if they are not healthy?

Of course, I don’t say any of these things.  For years, I have responded with a cheery smile, “Well, babies with problems need loving homes, too!”  Every time, the person is taken aback and says something like, “Yeah, I guess that’s true.”

I always hope that prompts them to give it just a little more thought, and maybe find something better to remark.  One can always hope.

This will be a difficult post for me to write.

If you have not watched the short Youtube clip at the end of my “Facing an Enemy” post, could you please go back and do it now?  [Note:  This video is very pro-life and positive.]

On that video clip, the baby’s parents do not specify which heart defect their little Gabby had.  Their doctors told them they could abort Gabby, or they could withhold the heart surgery, take her home and let her die.  From this, I assumed that it was such a severe heart defect that there was no hope of successful repair.

I have since found out that it was an Atrioventricular Septal Defect or AVSD.  This is one of the possibilities that we are facing with Verity’s heart.  (It is also called by other names, such as Complete Atrioventricular Canal, or CAVC.)  The article I just linked to explains that about 25% of babies with Down syndrome also have this heart defect, and that the surgery to repair it has a 95% success rate.

Did you catch that?  A 95% success rate.

Here’s a snippet of a medical article I found online about the prognosis if the defect is left unrepaired:

Half of children with untreated CAVC die in the first year of life. The main cause of death in infancy is either heart failure or pneumonia. In surviving patients with unrepaired complete atrioventricular canal, irreversible pulmonary vascular disease becomes increasingly common, and affects virtually all patients older than 2 years of age. Long-term prognosis in patients with irreversible pulmonary hypertension is poor.

Gabby’s mother Emily recently wrote that their pediatric cardiologist said she has patients with Down syndrome and heart defects whose parents have chosen not to allow the surgery.  The cardiologist said those patients are some of the most unhappy children she’s ever seen.  She told Emily that she’s specifically asked the parents, “You know your child is going to die very young without this surgery, right?”  And the parents understand.

This is the testimony of just one pediatric cardiologist.

There are currently 1,979 pediatric cardiologists in the United States.

We are not talking about anencephaly, where a baby is born without a brain, and there is no hope of survival.  The current expected lifespan for a person with Down syndrome is now into the 50’s and 60’s.

We aren’t talking about conditions in a third world country, where medical care is hard to come by.

This is deliberate withholding of readily-available medical care for the purpose of bringing about a child’s death.

And it is not illegal.

But the reason these parents are getting away with murder is because their child committed the unpardonable crime of being born with Down syndrome.  Can you imagine the media coverage and public outcry there would be if these parents made the same decision about otherwise “perfect” babies?

My guess is that these parents did not find out about their babies’ Down syndrome until birth, or they would have driven the Down syndrome abortion rates even higher.

There is backlash against parents who withhold life-saving medical treatment from their children because of misguided religious or natural healing beliefs.  Why not for parents who believe that their children with Down syndrome are so worthless that they work toward their deaths?

What basic LIE is at the bottom of this?  I have a guess, and it is also a clue as to why this outrage is acceptable to our culture.   People who practice infanticide kill their children because they love themselves more than their children.  If the theory of Darwinian evolution was true, as many in our culture assume it is, it would provide a perfectly logical excuse for infanticide.  Just call it survival of the fittest and go guilt-free.  I wonder if these parents know that they hold the same core beliefs that Hitler did.  He would have called Verity a “useless eater.”  He was more efficient in his killing methods, though.

Maybe everyone else already knew that this sort of thing was going on, here, now?  Am I the only one who has been in the dark?

I knew about Peter Singer and other godless men who sit in their ivory towers and coolly reject “imperfect” people.  (I hope you click on that link and bookmark it to read sometime!)  But parents?  Watching their own children suffer and die over time?  When it is easily within their grasp to give them life-saving help?  Wouldn’t parents be willing to cut off their own right arms if it would save their child’s life?

I am left reeling and heartsick.

We are going to tell our children about this reality, and we will be praying for the haters who are lost in the profound darkness and twistedness of believing a lie.

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9 Responses to “Disbelief, anger, sadness, compassion”

  1. Joy Horton says:

    Oh, gosh, Susanna. That is so horribly sad. I think I missed the video but will go watch it now – and will also check out Peter Singer.

    All I can say is, sin is UGLY – and this is what it does to the world. : (

  2. Laura (kidsmomofmany) says:

    I would always answer the “healthy” question with “This baby is a blessing no matter what.” Since Sofija’s death and obvious “imperfection”, I often struggle with wondering why MY baby had to die when I would have loved her NO MATTER WHAT and others who hurt there babies, abandon them or even kill them are given living babies.

    Verity and all babies are a blessing.

  3. Tanya Geraci says:

    Yes, it is sick. I had never heard of such a thing. I am confounded. I will look at the link and video tomorrow so I don’t have nightmares tonight. It is a terrible, terrible people and time we live in today. It makes me all the more grateful for the Lord and like-minded people.

  4. Natalia says:

    This is tragically sad and sickening, Susanna. (Tears) Thank you for sharing.

    I have lost a child and am extremely sensitive to the thoughtless things that people say. I guess I’ve even lost a couple of distant friendships over that and my responses to them! I have one thought about the “as long as they’re healthy” thing that people say. I was thinking yesterday after reading your post that the end of the sentence doesn’t necessarily have to imply horrible things people aren’t saying. It may, but perhaps not. For example, say a friend says to me, “Are you one of those homeschoolers whose children excel at everything they do and graduate at 12 years old?” I might say, “No, I don’t mind when they graduate or how good their marks are, as long as they love the Lord and their family, and do their best at their work…..” the end of that sentence for me would be, “that’s what I’m working for/hoping for/, that’s what I would wish for them”, etc, not I won’t keep them, accept them, they aren’t worth it, etc. I know my example is a different scenario, but I think that is more what many people mean. In any case, it’s still not the best thing to say and still needs a great answer ready!

    I have been glued to your blog and am so often thinking of and praying for you and precious little Verity.

    Much love
    Natalia

  5. Susanna says:

    That is a great thought, Natalia! Thank you!

  6. Kathy says:

    Just came across your blog tonight as I was looking at a friend’s blog that linked to yours. I thought you might be interested in the blog of our good friends, if you haven’t seen it already – http://www.babymatthew.wordpress.com
    Their 2 1/2 year old with Down syndrome was not expected to make it through child birth. Our family will be keeping yours in our prayers. God bless!

  7. Susanna says:

    Thanks for visiting and for recommending your friends’ blog, Kathy. AND for your prayers!

  8. Kristin says:

    I just can’t imagine not having a surgery that could help your baby, especially with a success rate like that!  Before A had her surgery at 36 hours, I was discussing the surgery with the surgeon.  She had ZERO chance to live without the surgery, yet we had to sign a consent form because it was considered “elective surgery”.  Umm… what???  Needless to say, we elected ;)
    Sorry for the late comment, catching up on your blog…

  9. Maria says:

    I have been guilty of saying ‘as long as the baby is healthy’. I have also been outraged enough to say things like ‘these  people do not deserve children’ to people who have chosen not to give things like blood transfusions because of religious beliefs. I consider them ‘whackjobs’. But I never knew one could legally withhold care from a baby with a heart condition if he/she had down’s. Why is this not known more ? I am speechless. Just speechless and outraged.

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