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Goodnight Sweet Prince

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Seven years ago today, I was pregnant with a baby boy.  A baby boy with Down syndrome.  I had already imagined what he would look like.  I had already imagined us going to the zoo, going to the park, reading books together.  Little did I know that my dreams would be shattered.  At 21 weeks pregnant, I discovered that my fetus had a 99.9% chance of having Down syndrome.  Countless people wrote to me, trying to comfort me, unwittingly irritating me with false hope that somehow the results of my amniocentesis were wrong.  ‘After all’, they’d say, ‘a friend of a friend of a friend was pregnant and the doctors said their fetus had 100% chance of having Down syndrome, but the baby was born completely fine.’  Oh, come on!  Don’t you think I’ve researched the odds of an amniocentesis being WRONG???!!!  Well guess what?  The results of an amniocentesis are 99.9% accurate.  So your friend of a friend of a friend clearly never had more than a blood test that said that the odds of their fetus having Down syndrome were high, but their newborn baby ended up having no chromosomal abnormalities.  I can’t explain to you how infuriating that time period was.  Because, not only did I have to come to terms with the fact that the child I was carrying had Down syndrome, but I also had to 1) educate everyone about the accuracy of an amniocentisis (which gives you difinitive results) versus the accuracy of the blood test (which only gives you statistics that could be WILDLY INACCURATE), . . .  you know what?  Before I go any further, let me explain to you exactly what an amniocentesis entails.  Then you’ll be able to offer COMFORT to a friend who finds themself in a situation similar to mine, instead of trying to provide them with false hope and inaccurate statistics.  So here’s the deal:

If someone tells you a story about how their pregnant friend was told that they were DEFINITELY going to give birth to a child with Down syndrome, but then their child ended up being completely healthy–their pregnant friend DID NOT have an amniocentesis.  Instead, they had BLOOD WORK that said that their ODDS of having a child with Down syndrome were (insert scary statistic) 1 in 12, or 1 in 22, etc.  Wow, aren’t those scary statistics!  Makes it sound like you’re DEFINITELY carrying a child with Down syndrome, doesn’t it?  Guess what?  THE BLOOD TESTS MEAN NOTHING!!!  If I could add a million exclamation points after that sentence, I would!  My blood tests showed that my odds of carrying a child with Down syndrome were 1 in 46.  I mean, seriously envision that.  Imagine yourself at a childbirth class consisting of 46 pregnant women.  Would you really be concerned that YOU were the 1 out of the 46 of you that was carrying the baby with Down syndrome?!  Probably not.  And in most cases, you’d have absolutely no cause to worry.  Because some women’s BLOOD test results come back stating that their odds of having a child with Down syndrome are 1 in 15.  TERRIFYING!!!  But yet, they give birth to a chromosomally typical child (aka a child without Down syndrome).  Yet, the woman whose blood work states that her odds of having a child with Down syndrome are 1 in 12,000 ends up having a child with Down syndrome.  Isn’t that cruel?  The fact of the matter is that obstetricians don’t properly explain the results of this blood work to their patients.  These obstetricians don’t tell their patients that prenatal BLOODWORK provides you with odds and statistics ONLY.  You might as well consult a Magic 8 Ball.  The results would be just as reliable.  The only way to know FOR 100% SURE that your fetus has Down syndrome is to have a CVS test or an amniocentesis.  When I was pregnant with Jack, I was too far along in my pregnancy to have a CVS test (and no, I’m not referring to a CVS drugstore home pregnancy test.)  In this case, CVS stands for “Chorionic villus sampling”.  It’s a less-invasive test that’s performed when you’re around 12 weeks pregnant.  The results of the CVS test are just as reliable as the results of an amniocentesis.  But I was one of those naive people who thought: “I’m not going to abort no matter what the situation, so why do I need to know if there’s anything wrong with the fetus?”  Well think about it–if you know for sure that you’re going to continue with the pregnancy no matter what, don’t you want to be prepared for whatever special needs your child may have?  If you find out your fetus has some sort of genetic abnormality, don’t you want to know in advance so you can RUN to Barnes & Noble and purchase every book that offers advice on raising a child with whatever genetic abnormality your child may have?!  Sigh . . . ain’t hindsight 20/20.  I never had the CVS test.  Instead, I had the same blood tests that every pregnant woman has, and my results came back with a 1:46 chance that I was carrying a child with Down syndrome.  Those results instantly led my obestrician to order a Level 2 Ultrasound, which is an ultrasound performed by a more skilled technician who is looking for specific abnormalities–a head circumference that’s abnormally large or small, limbs that are abnormally long or short, heart defects, or a thickened nuchal fold.  (Your nuchal fold is essentially the back of your neck.  In a person with Down syndrome, this area tends to be thicker than normal.)  Was I worried?  Not too much.  Like I explained, a 1 in 46 chance?  I mean, the odds were pretty good that I wasn’t the 1 person in the room of 46 pregnant women who was having the child with Down syndrome.

And so I was scheduled for a Level 2 Ultrasound at Tufts Medical Center (at the time–New England Medical Center).  It started getting real for me when I discovered that we were also scheduled to meet with a genetic counselor right before my Level 2 Ultrasound.  Just a tad disconcerting!  The genetic counselor gave us information on the most common chromosomal abnormalities and went through our family history (we actually had to arrive at the appointment with what I’d call a genetic family tree). By that point, I had done my research.  I knew that they were going to give me the option of having an amniocentesis after I had the Level 2 Ultrasound.  Before my appointment at Tufts, eeeeeveryone had their own personal opinion about having an amniocentesis.  If I was to sum up everyone’s response into three words, it would be a resounding “DON’T DO IT!!!”  Yep, everybody had bought into the horror stories that if I had an amniocentesis, I’d be putting my fetus at risk and it would die.  End of story.  Well, let’s be reasonable here–I wasn’t having an amniocentesis performed by some toothless livestock veterinarian in some backwoods Apalachian hillbilly clinic; I was having an amniocentesis at one of the best hospitals in the country!  But quite honestly, I just wasn’t one of those women who could go another 20 WEEKS without knowing whether or not her child had Down syndrome.  So I ignored everybody’s opinions and opted for the amnio.  Now let’s discuss the actual procedure . . .

Here I am, 20 weeks pregnant, lying on a table in a small room JAM-PACKED with doctors, nurses, and perhaps an Indian Chief or two.  (Why did Indian Chiefs just come to mind?  Is there a song that involves “doctors, nurses, and Indian Chiefs”?)  Whatever the case, there were probably about seven people with titles and/or multiple letters after their names in the room . . . and my husband, Dave.  There were two people monitoring the ultrasound machine to see exactly where the fetus (my baby, Jack) was located, to ensure that the needle they were about to plunge into my uterus never came even remotely close to him.  There were nurses and residents and possibly a few curious medical students piled into this tiny room, all looking on as a doctor inserted a GINOROMOUS needle (no exaggeration) into my abdomen, extracting amniotic fluid from my uterus.  If that sounds scary to you, yeah, guess how scary it was for me!!!

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An actual needle used to perform an amniocentesis.  (And you thought I was exaggerating, didn’t you?!)

As the doctor was extracting the amniotic fluid, Dave says to me (no, I’m not kidding) “Your amniotic fluid looks like Mountain Dew!”  I did my best to not BURST out laughing!!!  (Let me tell you–I am so unbelievably fortunate to have a husband that can make me laugh even during the worst of times!)

After they extract the amniotic fluid, they use it to perform two tests: 1) a FISH test (Fluorescent In Situ Hybridization), and 2) an amniocentesis.  You get the results of the FISH test within 3 days.  The results of the amniocentesis take 2 weeks.  The results of the FISH test are pretty much definitive; if the FISH test concludes your fetus has Down syndrome, you can count on the amniocentesis saying the same.  So, really, we only had to wait three days for the results of the amniocentesis.  I say “only three days” in hindsight.  Seven years ago, those “only three days” felt like a lifetime.

I clearly remember the day I got the results.  It was a Friday.  Dave was at his parents’ house with our friend Steve, doing something with the air conditioners.  The phone rang in the sunroom of our gorgeous house in Lowell.  We had painted the room a beautiful shade of blue.  It was our office, but eventually it would become our child’s playroom.  When the phone rang, I listened for any clues in the doctor’s voice that would give away the test results.  I thought I was prepared for what he was about to tell me, but–quite honestly–there’s no way to prepare yourself for that kind of news: ‘The FISH test came back positive.  Your fetus has Down syndrome.’  As I tried to wrap my head around what he was saying, he added (as professionally and tactfully as he could) that I had about two weeks to decide ‘how I wanted to proceed’.  What I didn’t tell the doctor was that I already knew my baby’s personality!  At the time, we had two spoiled free-range pet rabbits (Sneezy and Princess) who literally had their own bedroom, and every time I bent down to pet the rabbits, my fetus would kick me like crazy!  He did NOT like being cramped!  I knew this was going to be a child that was opinionated–who liked things “just so”.  And at 21 weeks, my weekly emails from Babycenter.com told me that my fetus was measuring around a foot long.  Seriously, as ridiculous as this sounds, imagine going to Subway and ordering a footlong sub.  THAT’S the size of the child that was in my uterus.   I had every intention of keeping my fetus in the first place, but now that I had some insight into the SIZE and PERSONALITY of my child–MY SON–deciding ‘how to proceed’ was no decision at all.

2006.05.31 Little Frog 20 weeks Pic for Babycenter

Jack, at 20 weeks.  We could tell from the ultrasound that he had my nose and Dave’s hands!

The doctor actually seemed relieved by my laugh and comment that we were absolutely going to keep the baby.  I can’t imagine his job is an easy one.  When I got off the phone, I immediately called Dave and told him that I got “the call”.  That the baby had Down syndrome and that he needed to come home immediately.  He broke the news to Steve and headed home.  Meanwhile, all kinds of horrible thoughts were running through my mind.  Everyone deals with THE NEWS differently.  I felt ashamed.  Embarrassed.  Because I had created something that was “broken”.  I won’t apologize for how I felt because it’s a stage of grief that every mother in my situation has to go through.  You don’t find out you’re having a child with Down syndrome and say “Yes!  That’s what I’ve always wanted!”  You gradually grow to accept your new reality.  I know one of my first phone calls was to my sister-in-law, Kerry.  When she answered the phone, I just remember shaking like a leaf and saying (through tears) ‘The test was positive.  He’s got Down syndrome!’  And we both broke down and cried together.  But the phone call I was most afraid to make was the one to my father.  If he knew how I felt at that moment, his heart would’ve broken in two.  I was so ashamed to tell him that his first and only grandchild was . . . defective, broken.  I want to cry just writing that, but that’s honestly how I felt at that moment.  I remember calling him, telling him the news through tears, and apologizing.  My poor father.  I’m “fortunate” that he has both a bad memory and horrible ADD, so I’m sure has no memory of “that” phone call, but for some reason it was so important to me that he know how sorry I was for not giving him a perfect first grandchild.  I guess that’s easier to understand when you realize that my father is one of 11 children (Yes, ELEVEN), and that I have over 30 cousins, only one of whom has a chromosomal abnormality–and it’s a random, extremely rare abnormality that effects both brain development and facial development, but in her case she was fortunate that this syndrome in no way effected her intelligence.  Not only is she highly intelligent, (and irritatingly skinny!) but she lives a completely normal life.  She went on to marry an amazing guy and they now have 3 beautiful, neurotypical boys.  My child was going to be the 3rd or 4th great-grandchild in my dad’s family.  How was it that my baby was the only one with Down syndrome?  I mean, I graduated valedictorian of my high school class!  Granted, it was a vocational school, but nonetheless, how was it that I was having a child that would most likely grow up to have an IQ that would qualify him as mentally . . . impaired???!!!  I . . . don’t . . . understand.

Believe me, there was no ego on my part at that stage in my pregnancy.  I’m a researcher by nature so I bought every book, consulted every website, read every article, and educated myself on all things “Down syndrome”.  I read articles about how to prevent tongue thrusting.  I read articles on the best way to position newborns with Down syndrome while you’re feeding them.  I had about 5 months to become an expert on Down syndrome.  I don’t think “pregnancy brain” was an issue for me; I was a mom-to-be on a mission.  While other moms spent the final weeks of their pregnancies “nesting”, I spent mine contacting the local Early intervention agency to make sure my newborn son would have all of the therapy he needed once he entered the world.  Literally.  Do you know how often a person contacts an Early Intervention agency before she’s even given birth?  Yeah, try next to never.  If some of Jack’s Early Intervention therapists–Valentina and Emily–read this, they’ll probably crack up.  Yep, check Jack’s records.  I had a consultation with a representative from the Thom Anne Sullivan Center when I was probably 7 months pregnant with him!

So why am I writing this?  Well, it’s been a rough day.  Whenever Jack has a doctor’s appointment in Boston, I’m a wreck for the next day or two.  It takes a serious emotional toll on me.  Doesn’t matter if the visit goes well or not.  It’s just a reminder that my child has Down syndrome.  And autism.  And Hashimoto’s thyroiditis.  And Celiac Disease.  And chronic sinus infections.  Every doctor’s appointment is a reminder of aaaaall of those things and it overwhelms me.  Today we saw (the world-renowned) Dr. Skotko at the Down Syndrome Program at MassGeneral and things could not have gone better!  But now I need some time to recuperate.  I’ve learned a lot about myself this past year and one of the things that I’ve realized is that it takes me about two days to recover after every specialty appointment that Jack has, whether it’s in Boston or Waltham or Lexington or Peabody.  It takes me two days to feel like myself again.  So I’m a total mess right now.  PLUS, I’m currently sick with what the nurse practitioner I saw last week diagnosed as “a summer cold” (but I have a feeling it’s actually bronchitis or pneumonia).  So I’ve been taking my prescribed codeine cough syrup every day, just to be able to function as a normal human being.  Um, Illness + appointment in Boston = emotional disaster.  So here I am, coughing up stuff that noooobody wants to see, while trying to hold it together in order to bring my son to a follow-up appointment at MassGeneral in Boston.  Where we meet with the world-renowned expert on Down syndrome–Dr. Skotko–and a camera crew (an AWESOME story for another time)–and me and my clinical obesity and my “definitely more than a summer cold” have to pretend (in front of a camera, no less) that I’m feeling totally fine, all the while knowing that the camera adds 10 lbs (which would maaaaybe classify me as “clinically morbidly obese” instead of just “clinically obese”?), trying to ignore those facts and focus on the most important person in the room–my son, Jack.  My gorgeous son, Jack.  If you get a prenatal diagnosis that you’re carrying a child with Down syndrome, trust me–you’d want to see a picture of my son.  His picture would assure you that everything will be okay.  Because he truly is that gorgeous.  That doesn’t mean that life will be easy, but for me . . . my baby’s appearance was sooo important to me.  I didn’t need my baby to look perfect; I just needed to know that he wouldn’t look like “DOWN SYNDROME”  (Again, if you have a child with Down syndrome, you’ll understand that seemingly harsh remark).  Jack may have every diagnosis under the sun, but at the end of the day I can look at him and say “Wow, he’s such a beautiful child.”

2011.09.25 Special Assembly Day 003

This room–that now houses our computer and stacks of paperwork and binders chock-full of Jack’s medical information–used to be Jack’s nursery.  And above his crib I hung a beautiful picture of a moon that rested above the words “Goodnight Sweet Prince”.  I surrounded it with (spray-painted) silver stars that were formerly glow-in-the-dark stars that spent years on my ceiling when I was a teenager.  Jack drives me insane most of the time, but he’s always been wanted.  He’s always been my baby.  He’s always been my Sweet Prince.

Love,

Pink Sweatpants

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