On Being Pregnant Again After Down Syndrome


It’s a funny thing to find oneself pregnant again after having a child with Down syndrome.  Some people never do go on to have more children after having a child with Ds – either because they hadn’t planned to in any case, or because, perhaps, the possibility of having another child with a lifelong diagnosis is more than they can or want to deal with.  Some people do go on to have another child – because they planned to anyway, or because in some secret place in their heart, they want a do-over.

Finn was our sixth child.  I was 40 years old when he was born, and Michael 41.  It was somewhat of a surprise pregnancy, but not a complete shock; after Lilah was born, I wanted another baby – just one more (it’s hard to explain . . . I felt like there was still another child waiting to join our family – which I admit sounds really kooky coming from someone who doesn’t believe in any of that divine or supernatural hooey.  It was probably the death moans of my biological clock).  Michael, on the other hand, was ready to call it a day and be done having babies – a very practical position to take, no doubt about it.  But, neither of us was very careful, and, well, if you play with fire . . .

And along came Finn.  He was definitely going to be our last.  Six kids, two parents in their 40s – that was it.  And while I was pregnant with him, I was in complete agreement.  I love being pregnant, but I was tired, and I couldn’t argue with the fact that we were about to have all we could probably handle.

Then he was born.  It was a hard birth – difficult to explain because it went off without a hitch, but it kind of wrecked me.  I felt like I had been hit by a truck after he was born; it just took a lot out of me, probably owing to the polyhydramnios I had developed which put my body into a degree of shock with his birth.  Then he had to go to the hospital and have surgery, and we spent a nightmarish two weeks living a dazed existence going back and forth between the NICU and home.  We learned that he had Down syndrome, and that was hard.  Really, really hard.  I grieved, I ranted, I wrung my hands, I shook my fists, and I cried myself out.  And this tiny kernel began to gnaw at me: I wanted another baby.  I wanted a do-over.  Not that I didn’t love Finn – there wasn’t a single moment that I wasn’t consumed by how much I loved him, despite my grief over his diagnosis.  I just couldn’t imagine that being my swan song in my long career of having babies.  I wanted to go out on a high note, not a sad one, left with memories of gloom.  I wanted a happy birth, and a happy aftermath.  I wanted the babymoon I never got to have after Finn was born.

It sounds silly now.  Or selfish, anyway.  And in time, I got over it, that urge to have another baby.  Down syndrome or not, it was hard to say goodbye to that chapter of my life, though, the childbearing chapter.  But in time I began to enjoy and appreciate the next chapter, the one of just raising kids, watching them grow up, and enjoying all the things that we could finally do as a family that were too difficult to undertake when I was constantly pregnant or caring for a newborn or nursing.

And then, surprise, surprise – I found myself pregnant again.  At 44 years old.  I didn’t even think it was possible, what with all the chemo and radiation Michael underwent when he had cancer, plus at my age I figured my chances of conceiving must have been pretty diminished.  Not so, evidently.

When I discovered I was pregnant last October, it wasn’t happy news.  I was upset.  And scared.  I had made peace with the end of childbearing!  I had moved on.  I had gotten rid of everything – all my maternity clothes, all the baby clothes, all the gear that Finn had outgrown, gone.  Where would we put this kid?  Space-wise, we’re maxed out as it is, in the house and the truck.

And what if there’s something wrong with this baby?

I spent the entire first trimester being really scared.  To the point of having anxiety attacks and crying jags, convinced that I was going to lose the baby – that the odds were that something was so terribly wrong with the baby that it would die.  And I kept thinking, “If it’s going to happen, let it be now, when it won’t hurt so much, before I get too attached.”  When the news hit that Michelle Duggar miscarried at 20 weeks, I went into a tailspin.  She’s only a year older than me; clearly pregnancy at this age could only end in heartbreak.

It’s funny.  When I was torturing myself with fantasies of a do-over after Finn was born, I wondered whether, if by some chance I did get pregnant again, I would do prenatal testing.  Just for peace of mind, you know?  But over time, as Finn grew and his having Down syndrome gradually stopped dominating so many of my thoughts and feelings, my feelings about prenatal testing began to evolve.  I didn’t do any prenatal testing with Finn, mostly because I was having a home birth and choosing prenatal screenings would have landed me in an OB’s office which I wanted no part of, and partly because even at 40 years old, it just didn’t really occur to me that I might have a baby with a genetic condition.  Naive.  Smug.  Call it what you want.  Probably some of both.  I did do some prenatal screenings with my other pregnancies, but I did them somewhat mindlessly, just going through the motions because I was advised to, but never really thinking to worry about possible outcomes.

So what would I do now that I found myself unexpectedly pregnant at 44 after having a child with Down syndrome?  It actually didn’t take much soul-searching for me.  I realized very quickly that I did not want to do any prenatal testing.  I think this surprised a lot of people.

Here’s the thing: the more I look back on how it unfolded with Finn, the more grateful I am for the way we received the news of his diagnosis.  Do I look back fondly on the hard birth or his surgery and hospitalization, or the grief I felt coming to terms with the fact that my baby had Down syndrome – and it was forever?  No.  But I am glad, so very glad, that I didn’t know until after he was born, that I got to enjoy a pregnancy filled with anticipation and not fear and dread, that I got to meet and fall in love with a beautiful tiny little baby before he had a frightening diagnosis attached to him, and that the news of his diagnosis was delivered to us gently.  If it turns out that this baby has a genetic condition, I’d like to have it unfold much the same way it did with Finn.

So, although I was pretty scared throughout the first trimester, I decided very quickly that there would be no prenatal screenings this time around, and I’ve had no regrets about that decision.  I’ve had three ultrasounds, one to date the pregnancy, and one “anatomical” ultrasound which, for me, only served to reveal the baby’s gender and to confirm that it’s safe to go forward with another home birth.  I was adamant during both, however, that I did not want to know about any soft markers.  I don’t want speculation, I don’t want shadowy possibilities that can only be confirmed or ruled out by more invasive testing.  I only want to know if the baby appears to be viable and healthy enough to be safely born at home.  The tech who did my ultrasounds is the same one who did my ultrasound when I was pregnant with Finn, and apparently, according to my midwife, she still feels terrible that she “missed” his Down syndrome. My midwife tried to explain to her that I’m grateful to have not known until after he was born.  When I was in the ER last week with that mystery pain and they did another detailed ultrasound, my biggest fear was not that they would find something wrong with the baby, but that they would find something wrong with the baby and tell me.  But according to all the ultrasounds, this baby appears to be just fine.  I know ultrasounds are not definitive, so I take all this with a grain of salt – and a measure of optimism.

I’m no fool.  I know that at my age, the odds are not overwhelmingly in my favor.  One source, downsyndrome.about.com, puts the risk of a woman my age at 1 in 38 of having a baby with Down syndrome, and 1 in 26 of having a baby with any other trisomy.  But odds and statistics don’t necessarily predict the future.  Would I rather this baby not have Down syndrome – or any other condition?  Of course.  I wouldn’t change Finn if I could, but I know the world is not welcoming to people like Finn, and  if I could choose for my child to not be faced with the prejudices and difficulties that go hand in hand with Down syndrome, of course I would choose that.  But I know that if it turns out that she does have Down syndrome, we can deal with that, and I don’t think I would be undone by it this time.  And if she has something more serious than Down syndrome?  We’ll deal with that, too.  In any case, we will love her – we already love her – and we will give her as full and healthy and loving a life as we can.

I decided not to do any prenatal testing because I just wanted to enjoy this pregnancy – this gift that I never thought I’d experience again.  I wanted to fall in love with this creature moving about inside me.  I wanted to revel in the magic of it all.  And that’s what I’m doing.

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12 Comments on “On Being Pregnant Again After Down Syndrome”

  1. Heather Stewart Seal
    February 23, 2012 at 1:51 am #

    Perfectly written, as usual. I chose to not do any prenatal screening with any of my children. My brother-in-law was in OB/GYN residency and told me how it was unreliable screening and would it really do anything differently once I got the news. I was like you, naive and overly-confident. Down syndrome happened to other people. People who were meant to have it happen to them. I never got the screening because I didn’t want the false results. Haha. I did have the OB on call put the blame on me in the hospital after Morgan was born. I was expressing my dissatisfaction in my OB and having been sent home in labor instead of being kept in the hospital. I went on to complain about my OB missing many signs . . .the non-reactive stress tests (major heart defect), the low amniotic fluid, the baby not measuring bigger than 33 weeks when I was 38 weeks, etc. She looked at me and said it was all my fault because I refused to do any prenatal screening. Beyotch!

    I chose the first trimester screening with Mia and Griffin because I wanted reassurance. I was certain everything would be fine and just wanted the numbers to back me up. Not sure how I would feel about the screening had the numbers come back differently.

  2. DS Class of 2008
    February 23, 2012 at 4:03 am #

    Congratulations and enjoy your sweet family! 🙂

  3. mkowalewski
    February 23, 2012 at 10:12 am #

    Yay for your pregnancy! I really enjoyed this post because it gave me some insight into what it’s like to be pregnant and/or want to be pregnant after having a child with DS.

  4. TUC
    February 24, 2012 at 2:38 am #

    Watching your pregnancy, I have been wondering what it might be like to be pregnant again at this age and after having Kimani, so this post meant a lot to me. I am impressed by your ability to choose to not dwell on atypical possibilities and to just enjoy being pregnant.

  5. bethany @ our perfectly imperfect life
    February 24, 2012 at 12:09 pm #

    I’m going through all these emotions right now and slowly realizing that Payton’s birth was more traumatic to me than I thought. I just don’t want that worry going through another pregnancy and if it is gonna happen, I just want to know and not be on pins and needles during delivery. Ugh, it’s fun, isn’t it?! 🙂

  6. Ah! I just realized you are pregnant and due around the same time….I am due July 5 – about 23 weeks right now!! We are having another baby boy.

    • Lisa
      March 6, 2012 at 7:03 pm #

      Congratulations!

  7. Rebecca
    July 31, 2012 at 7:52 pm #

    Well, I’m sitting here reading this, cheeks streaming with tears. My second (of 2) has Ds and everything you write parallels my thoughts, fears and hopes for having another baby. I’m not sad so much, from reading your post, but just rather relieved that my feelings are not so much out of the ordinary and that it is OK to have fears. Thank you for writing this and being honest. Apparently, it was something I neede to hear! Well done.

  8. Tracy Trask
    November 14, 2012 at 8:32 pm #

    I just found out yesterday that I am pregnant with my sixth child. Ryan, my son, was born only 11 months ago with DS. He has brought so much joy into our lives! I am 44 and will be 45 when this baby is born. My husband and I are in shock because we had decided not to have anymore children after trying for nine years to conceive little Ryan. Thanks for sharing your story! It is good to know I am not alone!

  9. karin
    September 14, 2014 at 7:11 am #

    Beautifully written, a tear of happiness in my eye. It is wonderful you had the chance to have another baby

  10. joni
    December 2, 2014 at 4:02 pm #

    Awesome story i had my 4 baby she was diagnosed after emergency csection heart defect and two days later trisomy 21 my age was 39. Well 1st yr was in & out of hospital heart surgery etc. My daughter was 16 months old and i found out i was pregnant at a routine annual ob visit. Confirmed at 41 i will have my last baby. Hes 11 weeks & the two are helping each other thrive together all i can say is were blessed and just ENJOY

  11. Kristen
    December 3, 2014 at 5:02 am #

    I wanted 4 kids but when my 3rd was born with DS I was convinced that I was done. Not because I was afraid of giving birth to a second child with DS(somehow I believed that no-one gave birth to multiple children with DS, that it was a one time occurrence), but because I was afraid I wouldn’t be able to care for my children as much as they would need. When my son turned 1, I chose to go for the 4th and we have a beautiful princess…the only one in the family. She doesn’t have DS and she has been a great help to her older brother in teaching him. I look back and think how silly it was that I thought I couldn’t have another child with DS. But, I’m glad I did because I would have worried the whole time and instead I enjoyed the sweetness of relishing the last child moments, like giving away our high chair, which I just did last week!

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