Why a diagnosis of Down Syndrome just didn’t matter. 35


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“I don’t give a [expletive deleted] if he has Down Syndrome, Up Syndrome, or Halfway- in-Between Syndrome – would you please stop my wife from bleeding out so she can hold her son?”

That was my reaction to the neonatologist’s diagnosis of Down Syndrome in the Emergency Room.  I simply wasn’t affected by the diagnosis.  Why not?  

If I had to guess it was because  - months earlier – I confronted my concerns  about Down Syndrome at the time Momma Bird and I were considering whether or not to get an amnio.

The amniocentesis is an invasive test.  In layman’s terms, your OB  sticks a big needle into your wife’s uterus to draw out amniotic fluid. The amniotic fluid will be sent to a lab, examined under microscopes, & prognosticated over by people in labcoats until a consensus is reached.

The amnio and CVS test predict, with a fairly high degree of certainty, whether or not your baby has Down Syndrome (as well as other genetic conditions, defects & disorders – some of which are really scary).

For many couples, the decision to have an amnio is not a decision at all  - what was once societal pressure to preemptively discover and deal with birth defects has become a standard and routine step to ensure Momma’s pregnancy is smooth and healthy.

But for couples who spend years trying to conceive – like Momma Bird and me – the decision whether or not to have an amnio carries greater significance.  A miscarriage during an amnio, a rather slight risk, sends a couple right back to “square one” of baby-making with just a little more baggage.

This decision  whether or not to have an amnio became a struggle for me, and I just didn’t understand why.  Having tried for over 2 years to get pregnant, and living through the sadness of 2 miscarriages, Momma Bird and I agreed we weren’t going to  consciously chose to increase the risk a miscarriage. It had been decided long ago in the first pregnancy: there would be no amnio or CVS.

Why then did I struggle with this decision?  Why did I need to know whether or not my baby had Down Syndrome?

I talked  through my confusion with a friend and colleague whose opinions I value.   I told him I wanted to be financially prepared – children with Down Syndrome are more expensive, right?    I wanted to prepare for the extended family’s reaction to a baby with Down Syndrome.   I wanted to know if I was going to be taking care of a child for the next 30-40 years (that was, at the time, the extent of my pathetically limited understanding of Down Syndrome).

So many worries I can’t even remember them all.

My friend cut through the bullshit and asked me 3 questions:

1) If the baby has Downs, are you going to abort? No, I answered.  Momma Bird and I were and are vehement pro-choicers, and our choice was not to abort even with a Down Syndrome diagnosis.

2) Assume you found out the baby has Downs – starting tomorrow, how will that change your approach to the pregnancy?   It would make me more nervous and more worried about the pregnancy.  It would make me anxious about the future – ours and the baby’s.  I would read dozens of books on Down Syndrome, and spend countless hours trying to anticipate what the baby would be, look and act like.   I would likely have mourned my perceived loss of the perfect baby. I would spend the rest of the pregnancy dealing with that reality.

3) Is that the kind of pregnancy you want?  No. So much of my life is filled with planning,  reducing risk, curbing expectations – and those parts of my life have far too much anxiety and worry for me; they aren’t that much fun any more.  On the other hand, this pregnancy was a lot of fun – it was invigorating and exciting: even the simple decision not to know the baby’s gender until birth added an element of mystery and excitement I could never have imagined.

My answers made it clear that  a prenatal diagnosis of Down Syndrome would do nothing but force me to create and confront expectations about who my child would be — before that child could show me for itself. 

I decided that if our baby was diagnosed with Down Syndrome I could accept  and live with that.  I promised myself  I would deal with it — if and when it happened and not a moment sooner.   For the rest of the pregnancy, I chose  to enjoy the excitement and mystery that came with daydreaming about an unknown and limitless future for my baby – girl, boy or Johnny Depp look-alike.

When Little Bird popped out of the womb, I saw 2 things: testicles and an unknown and limitless future. (I actually yelled out, “Nuts!!” to announce his gender to Momma Bird.)

When told by Dr. Eeyore that Little Bird “has Down Syndrome”, I saw 2 things: my wife bleeding out on the delivery table, and an unknown and limitless future for my son.

Accepting, early in the pregnancy,  that my baby could have Down Syndrome  helped me realize that it just didn’t matter.   My child would still have an unknown and limitless future.

Choosing not to have invasive prenatal testing for Down Syndrome kept me from changing that fact.

*****

If you are faced with a diagnosis of Down Syndrome, prenatal or at birth, here are 2 great posts I think you should read.  One is by a Dad, and the other by a Mom. Both will give you food for thought:

Sipping Lemonade:  Dear Mom with a Prenatal Diagnosis

Treyton’s Posse: Advice about Down syndrome for fathers in honor of Father’s Day

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35 thoughts on “Why a diagnosis of Down Syndrome just didn’t matter.

  • Reply
    mleach21

    Excellent 3-question decision tree! I am regularly asked if we had prenatal testing. We didn’t, and my wife has been consistent in being glad for not having it because she would have worried regardless of the result. Instead, she enjoyed her pregnancy thoroughly with our daughter with Down syndrome. Of course, that is our situation, and others appreciate knowing beforehand, but your three questions should help inform their decision on whether to accept prenatal testing or not. Thanks as well for the link to Treyton’s blog.

  • Reply
    Amber

    Love this ! My son was born at 34 weeks with a DS diagnosis. If i only knew then what i know now ! He is now 16 Mos old, and AMAZING. I would do it all over again! I feel so blessed to have him !

  • Reply
    lesemann

    I think your decision is wonderful…and your decision. It is between you and your wife and your God. It’s the way it should be! I have a friend with two teens on the autism spectrum, and another struggling with emotional issues. Her husband has been unemployed for several years. She is Catholic and in her late 40′s. If, God forbid, frankly, she became accidentally pregnant, at this point…I do not know what she would do. And I would support her in any decision she made. Abortions are never, ever a “good” choice – just a lesser nightmare for some in a nightmarish situation. I understand you won’t agree with me. But dialogues will hopefully remain civilized and open.

    • Reply
      Little Bird's Dad

      You hit the nail on the head – decisions surrounding pregnancy are so personal.

      I have to confess, I don’t know that much about autism. I had an uncle who we always described as “mildly autistic”, but in thinking back on that, I bet there was more the family never told me. Anyway, keeping your friend’s family in my thoughts/prayers.

      Peace,
      LBD

  • Reply
    Rachel

    We went through a similar questioning and came up with the same decision. And honestly, we thought our chances were so low that it wasn’t anything we needed to worry with. Katie is 3 1/2 years old and the mourning still goes on, but the joys and the blessings FAR outweigh all of the disappointments. I look at what she has brought to, not only our lives, but all those around her. For most all of our friends and family Katie was the first individual with DS that any of them had ever had close contact with. And I know none of us would changer her for ANYTHING.

    • Reply
      Little Bird's Dad

      Rachel – thanks for sharing! Like your family, ours had no experience with DS until Little Bird. It is really interesting seeing how each of our family members responds/reacts.

      Did you have any family members that seemed to avoid the baby because of the diagnosis?

  • Reply
    Leigh Ann Arnold

    loved this! I am a little behind on my blog reading and also just read a post from kimchilatkes on prenatal testing and they both made me think. She was making the point not to judge others on the decision on either yes or no to prenatal testing and I made the comment to her that since I have had Treyton that my views have somewhat changed or at least my quickness to judge. I was raised in a Christian home and always felt I was pro life, ( I like your statement about pro-choice and having the choice to choose life because I do not think the government should be choosing for us-I guess this is a whole different long debate!) Anyway, we did not have prenatal testing but our ultrasound did indicate there was a small chance Treyton had DS. I like the points you make and think they are very helpful for someone deciding what to do because after we had the ultrasound we had to decide on an amnio or not and these are the reasons we chose not to! Treyton is Treyton no matter what! I have learned though after sitting in a small lonely room and being told that something could be wrong with my baby that it is not easy and for someone to give me their opinion when they haven’t been in my shoes at times can be hard to swallow! As always love your blog!

    • Reply
      Little Bird's Dad

      Leigh Ann…

      I know the post you are talking about. I tried really hard not to judge in this post, and hope I was successful. I just wanted to put my “decision tree” out there in the hopes it would help someone.

      I love Rob’s post on this topic, too….I’ve been mulling it over since he posted it, and want to comment but I think he hit the nail on the head. (Readers, here is a link to another Dad’s perspective: http://treytonsposse.com/2013/07/down-syndrome-correct-opinion-prenatal-testing/ )

      I know that feeling that you mentioned – albeit in a slightly different context – the feeling of sitting in a small lonely room and being told that something is wrong with the baby. We had some miscarriages before Little Bird came along, and getting that message in a cold and sterile OB’s office is one of those dark and sad moments in life I don’t like to think about very much.

      Hope Treyton and your whole family is doing well!! If the Yanks keep losing, I may start rooting for your Tigers!

      Peace,
      LBD

  • Reply
    syntaxsinner

    You so totally rock it, man!

    I had a coworker with Down’s- he bagged groceries, I was a checker.

    I could say so much in favor of your candid speech, fatherly stature… oh you are RARE. Preach it, man.

    I was born with hereditary angioedema (people abort for that.) Also with hypogammaglobulinemia. And hyper LDLp. My body is like a V8 muscle car with broken windows, no muffler, an oil leak, a gas leak and more, but I look hot and revv… so I attracted a babe with major iron problems.

    Imagine a Jedi who moves slow like Yoda but when its crunch time, WHAMMM!!!

    My friend’s name is Andy. My namesake. So you need anything at at, I don’t have money, but I have medical world connections up the wazoo. I don’t give a rat’s ass what stands in your way. Tell me and I’ll bring a bat so to speak.
    echozulu6@hotmail.com

    -Andy Harrison

    At your disposal

    • Reply
      Little Bird's Dad

      Andy,

      Thanks so much for the support – I’m so sick of the “Woe is Me, I’ve got a Kid with Downs” motif, and will be posting about it more as time goes on.

      I catch a lot of flack in the DS Blog community for daring to voice this perspective, so its good to hear the message resounded with someone!!

      I love your blog, too…your About page is one of my favorites…right to the point, and witty.

      I’ve never heard of hereditary angioedema (aside from the Google Search I just did)…..email me at dad at littlebirdsdad dot com if you are interesting in doing a guest post to tell my readers about the condition: what it is, how it affects your life, etc.

      Peace,
      LBD.

  • Reply
    Nip it in the bud

    Parenthood is fraught with so many ‘what if’s’ isn’t it but thankfully I’ve learnt that energy put into worrying about a scenario you can’t know the outcome of is completed wasted. Preparing for the worst from a place of sadness and fear is like training for a marathon by not eating or sleeping. We chose not to test for the same reasons as you and understand the strange mix of certainty and confusion about the emotions that surface when faced with these decisions. For us a pregnancy so hard won was not going to be put at risk for anything and only couples who have been through the heartache of infertility and baby loss can understand that – it’s more than just a decision about whether you get a sneak preview into your child’s DNA before you meet him. Living with a child who’s future might be considered ‘limited’ by the world around him was not a concern for me, never being a mum if I lost the baby as a result of testing was.

    “worrying about the future is like trying to eat the hole in the doughnut – it’s munching on what isn’t” – Barry Neil Kaufman

    warm wishes, Nic

  • Reply
    Brian Jung Myeng Lee

    I’m very inspired by your post. I have run myself through genetic tests a few years ago to see if I had any severe genetic disease I may pass on when I have a child. Thankfully, I seem to be okay.

    I wouldn’t know how I’d deal with situation like yours, but it is encouraging. Love can do so much.

    Thanks you.

  • Reply
    Lisa Vankula-Donovan

    Bless you and your family on the arrival of your amazing son! Love that you yelled, “Nuts!” In the delivery room. I laughed or loud. My husband and I feel the same. We have three beautiful children and loved the shocked faces when we told the docs, during my pregnancy, we didn’t want to have the Downs testing (I was 40), because whether or not our baby was going to have it just didn’t matter. None if our children have Downs but we wouldn’t have cared anyway.

    • Reply
      Little Bird's Dad

      Thanks for the kind words, and letting us know we’re not alone in being cool with Downs Syndrome. Hopefully, this mentality will become the more common viewpoint in years to come.

      How old are your 3?

      Peace,
      LBD

      • Reply
        Lisa Vankula-Donovan

        My babies ;) are 6,4 and 3 months. And we don’t get the testing for any if them. We lost a son (full-term stillborn) back in 2005 and we were blessed to then get our three. Having Downs was the least of our worries. Having healthy babies is all we wanted.

        • Reply
          Little Bird's Dad

          I am sorry to hear of your loss in 2005. :(

          We had multiple miscarriages while waiting for Little Bird, so all I wanted was a healthy baby, too.

          That 3- 8 y/o range is my favorite…their brains are starting to explode with all sorts of uniqueness. Color me jealous!

          LBD

  • Reply
    Shana

    What a wonderful post. My husband and I are also pro-choicers but would never in a million years abort a baby with Downs. For this reason, along with my horribly uncontrolled anxiety that has come back with its friends for my pregnancy, we decided against all genetic testing. Moreover, 2 friends were told bu their doctors that their babies would likely be born with Downs Syndrome. When they both gave birth to beautiful baby boys, my husband and my fears that doctors are often wrong became a solid reality for us. Even so, the high-risk technician began meauring the baby’s neck on the untrasound right there in front of us. You are so right that these tests have become so commonplace. It felt like we were declining care to say no to genetic testing. But we were really declining undue anxiety.

    • Reply
      Little Bird's Dad

      Thanks for the compliment.

      Comments like this remind me that the folks that read this blog say things SO much better than me. Like this (paraphrased) quote: “Declining genetic testing isn’t denying care…it’s denying undue anxiety”. I LOVE it.

      (Although I think its okay to get testing if it will put your mind at ease)

      Thanks for your perspective – all too often, doctors get it wrong both ways in the DS diagnosis. And most of them are wrong about what DS means for parents…it ain’t that big of a deal. :)

      Peace,
      LBD