How Down Syndrome Came to Grace My Life: A Second Child and Then Some

(Part I Repost in preparation for Part II and III that I wrote but hadn’t posted.)

THIS story, the one I’m about to share, chronicles the wave of emotions I FELT about the miraculous little babies that came to grace my life forever just five short years ago.  It’s an honest account of a string of difficult days that ran together during a very emotional time in my life… my pregnancy with The Boys.  There was no Down syndrome to consider at that time.  That didn’t come until much later.  Just the existence of 2 Beautiful Babies who turned my world upside down in so many ways.  And then turned it back, right side up, on me.  It’s about how they came to be culminating with their first day on earth, outside of their mama’s womb. It’s an emotional account, not a list of historical facts — though they’re here too.  Because the development of a life (or 2) is an emotional roller coaster. The birth of a child (or 2) grants us mothers an active role in helping God perform his greatest miracle.  It’s an experience that rocked me to the very core of my soul.  And the little details — a second fetus, a not-quite-right measurement, a shadow on a sonogram, a line across the palm, an extra chromosome –sent my emotions soaring in directions where miracles are sometimes forgotten. 

 

I knew I wanted a second child — it’s what the Sarge and I always talked about — but I thought I’d check in with the Sarge, to give him the option to stick with the one child we had… or go for the sibling we’d always dreamed of.  The house is a wreck — in mid-construction.  And, I think I’m OK with stopping if he wants to.  After all, we’re in this together… though secretly I want him to say let’s go for it.  No sooner do I hear the magic words than I’m elated to be expecting my second child. Humorous thoughts of my oldest sister and how quickly she conceived dance merrily in my head.  Honestly, I’m relieved that it happened so quickly…  And just a little bit concerned that it happened so quickly.  After all, I want JUST ONE MORE child to complete my family and being so fertile at this point in my life is a bit scary if you catch my drift.  Note to self: ask the OB/GYN at our first visit about really reliable birth control.  I can’t have this happen again at my age.

I’ve brought Grandpa along to watch My Old Soul while the midwife confirms what the dipstick has already revealed.  As I sit waiting, gown cinched modestly under my butt that hasn’t started expanding yet from pregnancy.  I’m swinging my legs and disinterestedly perusing the assorted posters that adorn the walls of the examining room. I’m happily pregnant!  I come across one that depicts the bi-weekly growth of a developing fetus.  As I examine the 8-week picture, an asterisk notes that the second dark spot in the photo is a cyst.  I pay no mind as the door swings open and Betsy, the midwife who delivered the Old soul, enters with a smile.  I’m excited because I know that seeing the peanut baby that’s growing in me for the very first time makes it real.  She waves the magic wand over my belly and shows me the baby… Yes, it’s real.  Then I see the dark spot and a wave of fear grips me. It’s an ovarian cyst just like on the poster!  OMG, will it endanger my new baby?  But before the thought has time to morph into words Betsy says, “and there’s the other baby!”

 

WHAT?  NO!  She’s talking but it is not really registering.  It’s no longer about me.  It’s more like a passing conversation with a stranger.  She continues waving her magic wand.  But she can’t make it go away. She rambles on, “Do twins run in your family? They look good and healthy.  Both measuring right about 8 weeks.  Perfect!   They’re in two separate sacs. That’s good.”  Oh, I think, and manage to choke the words out of my still-in-shock brain, “then they’re fraternal?” Not necessarily! She explains that 2% of identical twins split in the fallopian tube and attach to the uterus wall independent of each other, in their own sacs.  Their development is healthier this way because they’re not competing for the single food source provided by one sac.  We won’t know for sure until they’re born whether they’re identical or fraternal.  She knows me.  She knows I won’t find out my baby’s gender…. correction: my babies’ genders until their birth.  Oh my God…  Twins! 

[When I was a little girl, I thought having twins would be cool.  As an adult and mother of one, I flip flopped on that and felt strongly that one baby at a time was more than a grateful mother could ask for.  Not twins!  Please, not twins!]

I’m laughing with Betsy, explaining there’s only one set of distant identical twins in my mother’s family.  But it’s a detached social laugh that has a tinge more worry than sincerity.  I hope she doesn’t notice. 

In the waiting room, feigning my own excitement, I tell My Old Soul who is beyond excited…  And I tell my father.  It’s appropriate that he’s the first to know…. again.  He was the first to know when we were expecting our beautiful daughter – a hint whispered in an airplane over the Atlantic Ocean on my way to fulfilling a childhood promise I made to him to take him to Ireland one day.  HE laughs heartily (while I’m still in shock) at me being in shock. “It’s just that you plan for everything and this was totally off your radar!” He’s right!  I show the oldest and youngest members of my extended family the sonogram picture… My Old Soul counts as she points to the floating peanuts “one, two!”  To me, they look like enemy submarines honing in on their target on an under water sonar.  I can almost hear the beep beep beep while my daughter’s and father’s voices seep into my brain from afar.

Not twins!  Just one.  I want just one.  I don’t want three children.  Everyone complains about 3.  3 is too many!  Just then I recall my sister’s concept of being earth conscious by just replacing oneself and one’s husband… having just 2 children.  Too late for that, I think!  I drift, like it’s not happening to me.  I’m in a place I’m not familiar with.  I’ve seen others here but “whoa is me” is NOT my style… Yet here I am.

Over the course of the next few weeks, as I tell people that we’re expecting twins, I feel only as if I’m trying on a shirt I didn’t really like when I saw it hanging on the rack.  As if I can take it off and put it back if it doesn’t fit me in the Try-on Room.  At this moment, when I look in the mirror, twins don’t fit me.  I read about the disappearing twin syndrome and think maybe that will happen to me through no fault of my own.  I’m guilt-ridden for thinking it but I don’t want to do this.  I don’t WANT to have twins now.  I want just one baby, two total.  Outwardly, I joke with folks congratulating me, “I always said I wanted 2!  Perhaps I should have specified two babies not two pregnancies!” LOL… but I’m not laughing on the inside.  I find myself feeling devastated while all sorts of women confess to me that they always wanted twins.  And I think I used to be one of them…  but not anymore.  I see a neighbor and I tell her.  She must see it in my eyes, the pain and confusion I’m feeling.  She responds with the most honest words I’d heard in 2 weeks, “Oh you poor thing!” and I start to cry.  THAT’S  how I’m feeling!  How am I going to DO this?  I work.  I have a 3-year-old.  My home is under massive construction.  One baby!  ONE Baby! ONE BABY!

At 10 weeks, on a crisp Autumn day, I’m working outside in the yard when I feel that telltale gush of blood that every woman knows too well.  Only I’m pregnant and I’m not supposed to be feeling that for another 8 months.  Once again fear grips me.  But this time it’s more tangible.  “Please GOD, don’t let me lose these babies.”  For the very first time since the news that I’m carrying twins I realize I DESPERATELY want my babies to survive.  I want my twins!

I’m still bleeding when Betsy tells me that my uterus is like a knitted sweater with a hole in it and it is unraveling. Bedrest is the only treatment.  My body needs to mend the hole or I’ll lose the babies to spontaneous abortion.  Suddenly, it’s all I can think of.  I need to rest… but I have a 3 1/2 year old and she doesn’t understand so I split my time as my soul feels torn in two.  Save the babies developing in my body.  Live for the one I have standing, smiling in front of me.  Weeks pass and I bleed intermittently.  I’m feeling good and bad.  Worried and content.  I’m having twins and I’m OK with it now.  More than OK.  I desperately want them… my beautiful babies.

I’ve stopped working on the house and the construction comes to a grinding halt.  I’ve stopped exercising as my belly grows… explodes with twins!  I’ve stopped almost everything by the time the bleeding finally stops after nearly 10 weeks. FINALLY!  It’s my time to enjoy the miracle.  I LOVED being pregnant with the Old Soul.  But this has been so emotionally challenging already!  So fraught with ups and downs.  I’m looking forward to relaxing.  Enjoying.  Breathing.  It’s January and  I’m barely 5 months pregnant.  Good news, I’ve stopped bleeding!

I’m beginning to let myself guess at what my future might hold.  We’re discussing names.  Two boy names, two girl names, one middle name.  But they all have to go together somehow. With the Old Soul, we knew her name before the Sarge and I even married.  At her birth, we had no boy names and thought we’d look foolish if she was a boy.  She wasn’t.  This time, we have 2 boy names but can’t settle on the girl names. We like some names but we need 2 that go together and one that goes with one of our boy names.  We’re stumped.  I’m anticipating a boy and a girl but the names don’t seem to fit.  When I put them together, there’s always something not-quite-right.  Then the sonographer notices an anomaly.  Something not quite right with the babies’ brains.   My fear returns.  It’s another sweater unraveling but I don’t know how or why.

Test after test shows the same thing. We measure over and over again and the left ventricals are enlarged. Growing. Potential diagnoses are bantered about like wild accusations. Like I’ve done something to make this happen.  I secretly wonder if it’s those first two weeks when I wished one of my babies would disappear. I want them and now the universe won’t let me have them. Punishment. I’m overwhelmed and underwhelmed by each diagnosis.  Specialists are rushing the same results to me over and over again. Enlarged. ENLArged. ENLARGED.  I have a choice.  I don’t take the out.  There is no out for me.  Sarge and I pursued this pregnancy purposefully.  I fought an emotional war with myself early on to get to this point.  I WANT these babies.  There is no going back.  I want them.  I desperately WANT them.  Then someone sees white spots on their brains.  “Calcification.  Hardening.  It’s a virus.  They’re dying.  They’ll be dead at birth. Stillborn.”  If not, it will be 2 small and painful lives followed by 2 quick deaths for them. They’ll live a very short lives as vegetables.  “Understand! It’s viral infections in their brains!”  More tests but I know — I KNOW like a mother knows — that I don’t have the viruses they’re talking about.  I KNOW it.  They test me and I’m right.  Still, they all tell me there’s something wrong.  Something dreadfully wrong. All but one, who whispers that she doesn’t see what they see.  I cry.  A LOT! I sit quietly tucked inside myself at big family gatherings. Someone yells at me so I leave.  I don’t care what she’s talking about.  She doesn’t know that my babies might be dying inside me.  I can’t think let alone deal with the petty emotions she’s feeling.  I am all alone as I take in one bad diagnosis, one bad guess, after another.  “Cyto-Megalo Virus.  Toxoplasmosis.  Microcephaly.  Hydrocephaly.”  There’s a shadow, a hole, in one baby’s heart. It’s a marker for Down syndrome.  Our first and only!  Two weeks later it’s gone, just like our favorite sonographer, my one ray of hope, said it would be.  “These things have a way of resolving themselves” she said. She was right!  The measurements of their brains, the disparity between right and left ventricals grows.  I take care of my sweet Old Soul and go through the motions. With conviction, I tell the medical profession en masse; this is what is meant to be and I quietly try to convince myself of the same as I feel the sweater unraveling.  Whatever happens, it’s God’s will.  I know that I have no control.  Except for the decision to continue the pregnancy, I relinquish all control. 

They are real to me now.  I can feel the babies kicking.  They roll like waves across my belly.  It’s as if they are wrestling over a tiny blanket they might someday share in a bed.  When I sleep, they play but I’ve stopped playing.  My faithful old body is giving out. In the pool of diagnoses, my body is contributing it’s own.  Torn rib muscles from a hacking seasonal cough and sprained back muscles that begin to spasm, all from carrying the weight of twins.  The orthopaedist prescribes a custom belt that lifts the weight off of my back and puts it on my shoulders.  My shoulder muscles are sprained now too.   I feel like any effort is futile so I do nothing.  I’m in excruciating pain… more physical pain than I was when I naturally delivered the Old Soul without an ounce of pain medication.  When I’m not sitting on the couch, I’m blindly, painfully going through the motions.  Yes, doctor. Yes doctor.  Yes doctor. One tells me to get off my feet.  Lay down with my feet raised to keep the swelling down in my ankles.  The next tells me to sleep sitting up to keep the strain off of my back and the pressure off of the babies.  Every other night I sleep the way each one wants me to.  Every other night I pray and cry, asking that my babies be spared all these terrible things the multitude of medical professionals have predicted. One Perinatal Specialist says I’m making the right decision.  He says that we’re in a unique place in medicine just now.  A period when medical technology has surpassed medical knowledge and they are all just making their best educated guesses at what it may mean.  I own his words… and I think, they don’t really know… not any more than I do.

In the midst of feeling utterly lost at sea, The Sarge and I get our first hint that the babies might be identical.  Why else would they each have an enlarged left lateral ventrical?  Identical development!  This is the only explanation we can come up with…  The thought blows my mind!  But now I feel sad that I might be carrying identical twins that will not survive their own birth.  I share these words with the people I love and who I know love me but I carry the burden and the weight of them all by myself… deep in my heart.  I am trying to be optimistic.  I am TRYING.

I am 32 weeks pregnant with twins.  I survived the twin shock that gripped me heartily those first two weeks.  I weathered a ruptured subdural hematoma that threatened to unravel and spontaneously abort them.  I managed to get the doctors to stop testing me and to prepare for whatever might happen at their birth.  I can hardly walk, sit or stand without excruciating pain.  I’m huge.  HUGE!  And I have 8 weeks — the growth weeks — left to go.  The left side of their brains are still enlarged and I’m still told there’s a viral infection causing hardening of the brain tissue that will result in brain death.  “Otherwise, the babies look good”.  They’re growing steadily.  Measurements are consistent with 32 weeks.  We’re moving right along… Then suddenly, they’re not.  They stop moving.

I haven’t felt them move in two days.  I can’t help but wonder if this is it. The end the doctors had warned me about. Still born!  I’ve heard stories about women having to carry and birth their dead babies.  I hope this doesn’t happen to me.  I successfully convince myself that maybe it’s just too tight in there. Everything is OK.  I can barely move myself, how could they possibly move when they’re all scrunched up in there? I tell Sarge I’ll call the doctor in the morning but the Old Soul’s nighttime potty routine overlaps with mine and together we see that I am bleeding again.  Spotting. 

Betsy casually tells me to go into the emergency room and get on a fetal monitor to make sure the baby’s aren’t in distress. I hear the nervousness in her voice and I’m sure she’s trying to hide it from me like I tried to hide mine just 7 months ago when she said that fateful word… twins! I’ve already been through the ringer so her concern barely registers.  I know I should have felt that old familiar fear but I don’t.  I feel calm.  I reassure the Old Soul that everything will be fine. “Don’t worry!  Daddy will stay with you.  It’s bedtime!  I’ll go to the hospital myself and be home in an hour.”  I’ve convinced myself — with no assistance from the medical community whatsoever — that it’s nothing.  Just pressure from carrying twins who are pushing at the gate. On the way to the hospital, I call my mother just to let her know what’s going on.  And to say that if I’m wrong, we may need her help tonight.  I tell her I’m OK.  Really!  I just might need someone to watch over my Old Soul in my absence… If Daddy needs to come to the hospital to be with me. If it happens, I think, it will be the first time in her short life that I’m not there for her…. But it will not be the last!

Their BIRTH Day to come…

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Birth Story, Down syndrome, Down syndrome birth, parenting. Bookmark the permalink.

8 Responses to How Down Syndrome Came to Grace My Life: A Second Child and Then Some

  1. Rosemary says:

    Maggie…your writing is excruciatingly poignant on this subject…and I mean that as the highest compliment I can pay you without hopefully sounding as though I’m patronising you. I’m not sure if you have written, or are writing a book about your experiences but if not then you definitely must! You write with such honesty about emotions around pregnancy and childbirth that, at the best of times, are overwhelmingly difficult to capture for most of us. Yet at no point do you lapse into anything bordering self-pity. And as you write this most difficult part of your story so brilliantly, I am so looking forward to reading the rest of it. Don’t delay too long…! Thank you so much for sharing your story. Love and light to you and your beautiful family! Rosemary

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  5. Where is post number 3 about the boys’ birth?! I read one and two and was waiting to hear how you were told about the diagnosis etc. And can’t find it!
    My brother and sister in law are currently going through this and I wanted to read that journey at the hospital.

    • Maggie says:

      So Sorry Martha, I’ve taken an unplanned, couple-of-year hiatus from blogging as we got started into the school segment of our lives. I started part 3 of their birth story but never finished. I will find the time to do so and repost the “series.” It has also occurred to me that I should be sharing our school journey with all its ups and downs, so folks have another version of how this may work for their children with DS. After all, I find it is absolutely my expectations that are the hardest part of raising My Beautiful Boys. Once I let them go, I am always blown away by their achievements!

  6. Where is post number 3 about the boys’ birth?! I read one and two and was waiting to hear how you were told about the diagnosis etc. And can’t find it!
    My brother and sister in law are currently going through this and I wanted to read that journey at the hospital.

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