Tag Archives: prenatal screenings

Who’s Cut Out For This?

I remember when, several years ago, a group of women friends and I sat around chatting, and the conversation turned, as it often does with a group of women, to pregnancy and motherhood.  One friend in the group was recounting her amnio with her last pregnancy, telling us all how it really was no big deal.  She said, “Of course I had an amnio – I could never handle a kid with special needs.”

In this whole firestorm over the new prenatal tests aimed at detecting Down syndrome, and the ongoing debate about terminating pregnancies when a prenatal diagnosis of Down syndrome is made, there seems to be a common refrain: “Not everyone is cut out to parent a child with special needs.”

Who is cut out to parent a child with special needs?  I can tell you that since becoming Finn’s mother, I’ve been told more times than I can shake a stick at that “special kids are given to special parents.”  I think this is a well-meaning platitude that sounds good but really doesn’t carry any weight.  I can assure you that the badge of Special Parent is only given after the fact.  I wasn’t special before Finn was born – and the truth is, I’m not special now, either.

How does one envision a person who is cut out to parent a child with special needs?  What traits and qualifications does that special parent supposedly have?

I’m just a regular girl with no special qualifications, and plenty of faults.  I’m not especially long on patience; I’m a little on the anal-retentive side; I’m a creature of habit; I value me time.  I enjoy a good book, a nice martini (when I’m not knocked up), and an occasional night out with the girls.  I think it’s important for my husband and I to have somewhat regular “date nights.”  I swear.  A lot.  I like a good dirty joke and I’m not above potty humor.

I have no special skills – nor are any required of me – to be Finn’s mom.  All that’s required is that I love him – and that’s easy.  As easy as breathing.

I know that when Finn was born and we learned that he had Down syndrome, I, too, protested: “I’m not cut out for this!”  I’m not even sure what I meant.  I’m not sure what I, at the time, thought made a person better qualified than me to have a child like Finn.

What sort of picture do people who insist they’re not cut out to parent a child with Down syndrome have of the everyday lives of families of children with Down syndrome?  I’m trying to remember what picture I may have had.  I don’t think I really had a particular picture in mind, just a sense that there must be a whole lot of sadness and sacrifice involved.

That’s not what our life looks like in reality, though.  Our family life really hasn’t changed at all since Finn was born.  Michael and I still have date nights, we have two wonderful babysitters who adore Finn and have no qualms about sitting for him and the other kids.  We still do Little League and gymnastics and swim lessons.  We still take the kids out to dinner and ice cream once in a while, we’ve managed a couple of family road trips, we go to the park and we have picnics.  We crank up the stereo and have dance parties in the living room after dinner.  We laugh.  A lot.  We have a busy, raucous house.  Finn hasn’t changed that; he’s only added to every aspect of our family life.

What are any of us really cut out for, anyway?  Life lobs so many curveballs at each of us over the course of our lives.  How many things have you already stood up to and discovered that, yeah, you actually can do this – things you never dreamed you were cut out for?  What would life be like if we all could opt out of every challenge or unexpected event that landed on our doorstep?  Do we avoid the things in life that teach us, that expand us as human beings, that show us what we’re really made of just because those things do not fit into the plan we had for ourselves?  And if so, what does that say about us?

Something to think about.

I Get Around

I am very honored that I have been asked to post as a guest blogger on two different blogs recently.

I was asked to share my experience breastfeeding a baby with Down syndrome over on Down Syndrome New Mama; last week I shared our story, and this week Part II has been posted which talks about tips and advice to deal with hurdles commonly associated with breastfeeding a baby with Down syndrome.  Down Syndrome New Mama is such a great resource of information for new parents of babies with Down syndrome, and it’s my hope that some expectant or new mom out there will find some encouragement in breastfeeding her little one.

***

With the recent introduction of new prenatal screenings aimed at detecting Down syndrome in the first trimester of pregnancy, a vital discussion is taking place online about the ethics of the testing and the potential implications for the Down syndrome community and society as a whole.  Patti at A Perfect Lily has been running a series of posts concerning this topic, and has asked several people to write guest posts for her readers.  So much of the discussion about prenatal testing that is taking place everywhere on the internet seems to revolve around the pro-life vs. pro-choice debate, and for many, the answers to the questions are found in their religious beliefs.  My feeling is that this issue has very little to do with religion – or, rather, centering it on “God’s laws” only serves to alienate an entire potential audience.  Today, I share my perspective on Patti’s blog; I hope you’ll read it, think about it, and share it:  It’s About Wanting a Baby.  It was brave of Patti to feature a Heathen like me on her blog – thank you, Patti!

Next week, I’m hoping to write here on my very own blog a little more about discussions that center around God that shouldn’t.  Stay tuned.

Better Off Dead

It’s taken all this time, but I finally see the light – and I want to offer my deepest apologies to my family and society for allowing my head to be clouded by silly emotions like motherly love for so long, and my most heartfelt thanks to companies like Sequenom and Verinata Health for working so hard to stay on the cutting edge of technology and develop state of the art prenatal screenings that make it easier than ever to determine as soon as possible if a pregnant woman is carrying an imperfect fetus.  It was this article that finally got through to me how important it is for every woman – but especially those deemed high risk by their health care providers (even if that “high risk” is based only on statistics and not actual subjective information) – to take advantage of the advances in “preventative” medicine these companies have developed for us, and to find out if she’s carrying a baby with a chromosomal abnormality as soon as possible so that companies like Sequenom and Verinata Health can improve their profit margins, and the “economic impact” of allowing these defective babies to be born can be mitigated.  And we all know what I mean by “mitigate.”  Yes, abortion of a fetus with a “severe developmental disability” like Down syndrome is unpleasant to think about, so just try to go to your happy place.  Anyway, let’s face facts: better to do it early before the mother has a chance to get attached, and besides, what’s the alternative?  To allow the world to be overrun by a bunch of retards?

I know I never asked for better, earlier, more accurate prenatal tests to be developed, and as far as I know, none of the women I’ve ever known has demanded it either.  But these companies and the medical community are actually doing us a favor.  They know what’s best for us.  What are we but a bunch of incubators of potential problems, and filled with all kinds of frivolous emotions to boot?

I was being selfish when I declined prenatal screenings.  It was silly to see that tiny little heart winking away at me on the ultrasound screen at eight weeks pregnant and to think of that little creature as human, as my future son or daughter.  It was extremely shortsighted of me to decide that I would take and love whatever baby sprung from my womb, because if we were in a position to have a baby, then we were in a position to have any baby.

How was I to know I would end up with this?

And to think I could have avoided all those struggles with breastfeeding!  What was I thinking, that all that time and effort would pay off?  And for what?  A walking, breathing burden.  I didn’t realize he was a burden . . . if only this article had been published sooner!  If only these tests, these wonderful tests with their snazzy marketing campaigns, had been available four years ago!  Of course, even then there was amnio and CVS . . . what was I thinking?  Selfish.  And now I have to pay the price – my whole family has to pay the price.

Okay, so maybe our minds and hearts have been broadened by this little boy.  Maybe my other kids and my husband and I have gained compassion for all humankind and learned how to embrace diversity.  So what?  Such small potatoes compared to the profits companies like Sequenom and Verinata Health could have made off of us, and the immeasurable cost to society Finn will have over his pathetic lifetime.  I mean, gosh!  We all know how important it is to make a buck and save a buck – especially in today’s economy!  If we all dig down deep, we can all see that the bottom line really is more important than human life – especially imperfect human life.

Yeah, totally a life not worth living.

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.

Down Syndrome In Writing

Like The Shape of the EyeThe Politics of Down Syndrome examines how Down syndrome has been treated by the medical profession and society historically, and how our attitudes today are still very much shaped by old prejudices and outdated ideas about Down syndrome.  While the author has a young daughter who has Down syndrome and he does say in the book that having her has definitely influenced his own evolving views, this is not a memoir.  It’s more a sociological study . . . .

Read the rest of my review here for a chance to get your hands on a copy of this book.

Also, check this out: On Prenatal Screenings, Down Syndrome, and Being Pro-Choice was picked up by Yahoo! Voices.  Please share it!

Prenatal Screening, Down Syndrome, and Being Pro-Choice

I’ve always held myself out to be pro-choice – that is, I stand behind a woman’s right to have autonomous control over her body and to choose her own reproductive destiny, including safe, legal abortion if she so chooses. How does this position reconcile, however, with the desire to raise awareness about Down syndrome, especially as it pertains to prenatal screenings? Does finding the termination rate in prenatally diagnosed cases of Down syndrome (over 90%) appalling, and having a wish to better educate people about the realities of Down syndrome with the hope of impacting this termination rate make one “selectively pro-choice,” wishy-washy in one’s views, or a hypocrite?

I would argue that no, it does not.

Let’s look at prenatal screenings:

Although amniocentesis has been performed in various manners for over 100 years, it did not become widespread as a method of detecting fetal genetic conditions until the 1980s. The procedure was developed and improved upon by numerous doctors and scientists over the decades as an experimental tool to better understand pregnancy and the effects of certain environmental factors on fetuses. Its development was never demanded by the public; in fact, no form of prenatal screening has ever been demanded by the public until it entered a phase of being marketed to the public. If amniocentesis was being occasionally and selectively performed a century ago, that was certainly before “informed consent,” and it’s safe to assume that women who underwent amniocentesis in the early years and decades probably weren’t presented with a choice about it.

In the 1980s amnio gained widespread popularity as a tool for screening for birth defects – most notably Down syndrome – in older pregnant women (those over 35). Subsequently, more screening methods were developed that were less invasive than amniocentesis (and therefore didn’t carry the risk of fetal harm that amnio carries), but also less accurate. These blood screenings (most notably, AFP, triple screen, quad screen, and first trimester screening) were being offered to all pregnant women, of all ages, by the mid-1990s (although often, as I can attest to by my own experience, they’re not presented as optional, they’re presented as, “Okay, at your next appointment, we’ll be doing your AFP screening.” In truth, this is the case with just about all prenatal procedures – as well as hospital procedures administered during labor and delivery: “Next month we’ll do your glucose tolerance testing,” or “Now we’ll place your IV and get you situated with the fetal monitor,” effectively taking the element of choice out of the picture and making these non-compulsory procedures seem mandatory.) The biggest drawback of the non-invasive blood and ultrasound screenings is the high rate of false-positive results, which usually lead to the more invasive (and risky) amniocentesis anyway.

It should not escape anyone’s attention that there is a reason prenatal screenings are carried out as early in pregnancy as possible: to allow for easier termination, period. If these screenings were undertaken purely with the noble intent of preparing parents for possible outcomes, they could realistically be carried out at 25 or 30 weeks’ gestation, still allowing for plenty of time for the parents to “prepare” themselves.

It would be commendable if prenatal screenings were carried out compassionately, intending only to provide information and an opportunity for preparedness. However, the truth is that prenatal screenings are tools meant to screen out birth defects – meaning, there is a clear bias of these screenings and tests in favor of termination. Stories abound of mothers being given a prenatal diagnosis of Down syndrome and being told, “This can be taken care of quickly and easily. We can schedule your termination this week.” (And using possessive language such as “your” effectively makes it feel like a personal right that should be exercised.) Even when that’s not exactly what parents are told, they are very often painted a very grim picture of life with Down syndrome and left to conclude for themselves that abortion is the most humane option for the baby, the family, and society.

If I had a dollar for every woman who’s told me, “I wouldn’t terminate under any circumstances, but I would just want to know . . . .” Many, many women genuinely can’t fathom ever considering termination of a pregnancy; and yet, why is the termination rate so alarmingly high in prenatally diagnosed cases of Down syndrome? I would venture to guess that a great many of those same women who don’t believe they would ever consider termination also can’t fathom being faced with a doctor telling them that their child will likely never walk, talk, read, or be toilet trained, and who will forever be a burden and a financial drain on the family and the community. Even in this so-called enlightened age, this is still an all too common description of Down syndrome by medical professionals.

It’s very much a self-fulfilling prophecy that we’ve created and continue to nurture: we as a society hold onto outdated images of people with Down syndrome – odd-looking people ambling around in organized groups, unengaged, unable to communicate, perpetually childlike and dependent. These images frighten us on some level, threaten our innate desire for conformity, and so we continue to exclude them from mainstream education and life, marginalizing them, which prevents them from realizing their true potential. And so they largely remain on the fringes, dismissed, and very likely more dependent than necessary and less able than possible – a monster of our own making. Continuing to treat Down syndrome as a condition that should be terminated prenatally also effectively feeds the attitude that people living with Down syndrome are not worthy of compassion, dignity, or respect – let alone life itself. The best way to keep a class of people down is to continue to oppress and marginalize those people.

The truth is that people born now with Down syndrome on the whole do much better health-wise than ever before thanks to medical advances, and when provided with appropriate community supports, inclusion in every aspect of family life, and educational and employment opportunities, they do better socially and academically than ever before in history. Take any one of these things away, and the impact on quality of life is indisputable.

So the truth is, an honest, up-to-date picture of Down syndrome is not widely provided to parents receiving a prenatal diagnosis – or even to those contemplating prenatal screenings to begin with. Further, because people with Down syndrome – and all varieties of disabilities – are still largely excluded and marginalized, the average person does not have any first-hand knowledge or experience with Down syndrome. They likely have vague stereotypes promulgated by society, coupled with bleak predictions from medical care providers they trust, and that’s it.

No wonder the termination rate for prenatally diagnosed cases of Down syndrome is so high.

Back to the original question: can a person be pro-choice and still wish to change perceptions about Down syndrome in the hopes of impacting the termination rate?

While I believe every woman should have the right to terminate a pregnancy, I also believe that such a potentially profound decision is best made with full information. The truth is, the vast majority of women who terminate because of a prenatal diagnosis of Down syndrome wanted to be pregnant – they wanted a child. Unlike early abortions that occur because the woman, for whatever reason (in most cases, an unplanned pregnancy and a lack of resources to raise a child), does not want to be pregnant or to have a child – any child – women who allow their pregnancies to progress to the point of undergoing prenatal screenings are women who actually do want to have a baby – even if it was unplanned. So isn’t it only right and responsible to provide her with honest, current information about the realities of Down syndrome?

And the truth is, this honest information is not likely to be given by medical professionals (despite the recent enactment of the Prenatally and Postnatally Diagnosed Conditions Awareness Act), because it’s not likely that most medical professionals actually have much knowledge about Down syndrome beyond what’s found in text books. It’s going to take families directly touched by Down syndrome, and people with Down syndrome themselves, speaking out and raising awareness. And it’s going to take society allowing them a voice, and not shutting them down and dismissing what they have to say.

That’s my aim. When I talk about our life with Finn, when I post things about Finn and the impact he’s had on me and our family, I do it to provide a picture from our side of the fence. I remain steadfastly pro-choice, but I’m also pro-information and -education, as should everyone in a compassionate, enlightened, and progressive society strive to be.

31 for 21: Prenatal Screenings

So the big question on a lot of people’s minds (I assume) is: “Will you do prenatal screenings? You know, being that you are of such advanced maternal age. And you already have a kid with . . . well, you know.”

First of all, let me just say that it is so very early that none of this seems real to me yet. I am full of worry and anxiety about logistical and practical things, and yes, the wellbeing (and viability) of the baby . . . but it’s all kind of abstract at this point. I don’t feel pregnant. I don’t look pregnant (shut up). The only thing that tells me there’s a baby growing in there are the three pregnancy tests I took which all fairly screamed “HEY LADY, YOU’RE KNOCKED UP!!! AGAIN!!!! HAHAHAHAHAHAHA!!!”

Anyway, when considering prenatal screenings, I think there are two important questions to consider:

1. What is the potential information to be gleaned from the screening?

2. What potential action would you consider in light of the information you might glean from the screening?

While I did have some routine prenatal screenings done with all my pregnancies except (ironically) Finn, they only included blood tests (AFP screening) and the first trimester screening in my third and fourth pregnancies; I never had amniocentesis or CVS, though I was over 35 for my third, fourth, and fifth pregnancies.

I could sit here and tell you that the reason I declined those invasive tests was because of the risk of resultant miscarriage, and that would be the truth. But it would only be part of the truth. The rest of the truth is that I just never really fathomed that a baby that wasn’t . . . normal . . . would happen to me. It really wasn’t a smug thing, like I thought I lived far too charmed a life for complications to happen to me. It was more like . . . I had experienced more than my fair share (in my estimation, anyway) of bad, so what were the chances? And yeah, I guess all that birth defect business seemed so abstract to me – that was the kind of thing that happened to other people that I only heard about. Okay, so I guess I was a little arrogant.

Obviously, I know differently now. I have a son with Down syndrome, and it’s opened my eyes to a whole lotta reality, including the fact that yeah, this stuff can happen to anyone, including me. And obviously, at my age, the risks have increased pretty dramatically. For Down syndrome and probably a number of other things.

So, will I do prenatal screenings this time around? I’m thinking that no, I will not. Why in the world not?

Back to the questions I posed earlier:

1. What is the potential information to be gleaned from the screenings? Birth defects, genetic conditions, physical anomalies. Some of which could be very serious. Some of which could even be incompatible with life.

2. What potential action would I consider in light of the information I might glean from the screening? Well, obviously potential action would depend on potential diagnosis. Some diagnosed conditions might only demand careful monitoring, while some might require a choice to be made between continuing or terminating the pregnancy. And while I remain staunchly pro-choice, I am not in favor of weeding out imperfect babies. I can’t see myself ever making that choice, and to be honest, I’d just rather not be faced with such a choice. I know we have room in our family and in our hearts for another baby with Down syndrome, or whatever else, come what may. And in the event that this baby isn’t meant to be for the short or the long run? We’ll take that as it comes. I don’t feel a great need to know as soon as possible. There is something to be said for knowing for the sake of preparedness; I’d rather find out after the baby is born.

As much as possible, assuming this baby is viable and the pregnancy continues to term, I would like to fall in love with him or her as s/he grows inside me, as I have with all my other babies, as a baby, not as a frightening diagnosis. Whatever genetic conditions he or she might have, it happened at the moment of conception, and it’s already said and done now. I will have at least a couple of ultrasounds to rule out obvious anomalies which would make a home birth unsafe (yes, we are planning to have this baby at home, like Finn and Lilah were born, if at all possible), and my midwife will be monitoring me and the baby closely.

So that’s the plan.