One year ago today

“It’s Down Syndrome.”
I heard the voice say on the other end of the phone. Her voice had a soft melody to it, with the sentence ending on a slightly lower note than the beginning.  I had been waiting anxiously, eagerly, for this phone call since I had the CVS three days before.  I spent the weekend researching all I could regarding increased nuchal translucency and enlarged bladder.  Most of what I read terrified me. In all that I found, aside of the obvious desire for normal results, I hoped it was Down Syndrome.  The other likely scenarios were Trisomy 18, which would have brought a harder choice or megacystis, where the baby would die.  At that point in my pregnancy, I could not imagine carrying a baby to term that I knew would not survive.  Down Syndrome was livable, not what I had pictured, but totally livable.
“Ok. Ok.” I said, exhaling, trying to calm my racing heart. “That’s ok.  It’s not Trisomy 18.  My baby can live.”
“Do you know what you want to do?” my midwife asked in a non-judgmental way.
“I want to continue.  I need to talk about it with Chris, but we discussed the scenario, and I think we’re ok.”
“Do you want to come in right now and talk?” she asked.
“No. it’s ok.  I have three more patients to see anyways.  It’s ok.”  I was surprisingly calm, no tears.  We said our good-byes after she told me I could stop by afterhours if I needed to.
As soon as I got off the phone, I called Chris and told him the news.  At first I heard what I thought was disappointment in his voice, but realized later it was simply surprise.  Based on the nuchal translucency, we were given a 70% chance that the baby would be chromosomally normal. In his world, those are pretty good odds.  In mine, I knew what those numbers really meant. We agreed to talk more when I got home. I then went and saw my next few patients all while keeping it together as this huge life changing news rattled my head.  Little did I know that this would be practice for what was to come.
One year ago today I learned that the baby I was carrying had Down Syndrome.  I took the news in stride.  Tears came later when I thought good and hard about how my life would change, but I didn’t doubt my ability to raise my child with love regardless of her diagnosis.  Over the next few months I prepared myself.  I read memoirs of those raising babies with Down Syndrome.  We met with a special needs lawyer to get our finances in order and prepare for the future of our child. We attended our state conference for Down Syndrome, learning about the local services, preparing for potty training and meeting parents of children with Down Syndrome.  We found a pediatrician that was very familiar with Down Syndrome, researched day cares accustomed to Birth to Three and started collecting names of good therapists.  We embraced the diagnosis.
Perhaps you can understand the enormity of my loss. Sometimes I feel like I have to justify my grief- yes, I’m sad even though she had Down Syndrome.  Yes, I’m sad even though she would have been very ill.  Yes, I’m sad even though we were told she might die.  I know I don’t have to justify my grief to most of you; you are all so kind.  I think I’m simply processing the special injustice of saying yes to so much and not being even given the chance to parent this baby beyond the NICU.
What injustices do you mull over in your mind?
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13 thoughts on “One year ago today

  1. Meghan, I can feel just a glimmer of what you must have felt that day, when you received Mabel’s diagnosis. I wish there was a way to store and upload the experience, the emotions and implications of these pivotal/defining moments…., Oh do I seem a little off today? Well, here. Let me plug you into what we went through with my daughter Mabel….

    I feel your deep, deep sorrow. I feel your pure love for your daughter. I feel your fighting spirit and your total willingness to embrace all that Mabel’s diagnosis would bring. And I rage at the senselessness of Mabel’s death, in the face of this. It is unbelievably shitty. I am so sorry.

    There are many, many injustices that plague me, in the loss of my sons. Too many to discuss here.

    Know that I think of you and Mabel often, and I’m encouraged by your strength and conviction and openness.

    • When I try to think of Mabel, I try to think of who she really would have been. A sick child, yes, but my child. I try not to romantacize what my life would have been like because I feel like imagining that life will help me really be in touch with my grief and sorrow. it is shitty- thank you! as is losing two babies. frankly, thats shittier than anyone should have to even imagine.

  2. I can relate to so many parts of this post, I spent my waiting-for-diagnosis time, wishing for Down Syndrome. It was that or T18, and we knew we wouldn’t continue with a fatal diagnosis. Then there was that moment, where they said, it’s not T18, and I thought, thank god, everything is going to be ok, only for them to say in the next breath, but something is seriously wrong, and then when they broke it down for us, we realised we were still facing the same decision, just with a different diagnosis.
    I also remember the first anniversary of diagnosis day. You are in my thoughts. X

    • Right? and I don’t mean to minimize t18- I greatly respect those who carry to term. For me the difference was in prognosis. Down Syndrome generally the prognosis is fine- hurdles, yes- but livable. I see people all the time with Down Syndrome. Silly me, feeling relief, right? SOunds like you had some very similar emotions, just on a different time table. If she had been diagnosed with t18, the sorrow would have been just as great as losing her to complications of Down Syndrome after birth. so much sorrow in a terminal diagnosis.

  3. Mabel is so lucky to have such loving parents who accompanied her every step of the way. I so wish you had years of walking alongside her, loving her. I am so sorry this past year has been so trying for your family. So unjust, indeed… But is there anything just about babies dying?

    I absolutely see the injustice for you to have gone through so much preparation, so many YES and then be faced with Mabel’s death. Yet if i am to be completely honest, i have to say that i’ve had the opposite reflection — it’s so unfair that Paul, a healthy baby born at term would die in my arms when medicine is able to save so many babies living with complicated medical conditions (i am aware it doesn’t make sense, and i hope i am not hurting anyone by writing this)…

    thinking of you and Mabel. xo

    • no hurt to me! I had similar feelings when I was int he NICU, if for just a short time. My baby was HUGE compared to the others around her. She was in a room with the sickest babies- ones born at the cusp of viability, ones with severe outward birth defects. My baby was a healthy weight, almost term and looks-wise didnt look like she had anything wrong with her. but she died. I’m sure others who have had babies who were born premature feel similarly about those babies born earlier than theirs, who live. the injustice of that! and those born at term with no birth defects that die of surprise injury- the injustice of that! Or those born appearing normal but with genetic conditions that just dont allow life- the injustice of that! I feel like we might all share similar roots of frustration that modern medicine can do such amazing thing, but yet could not help our babies.

      • Exactly. I think that, having been raised to believe in the all-mighty powers of medicine, it feels incredibly unjust to see it fail just when we needed it the most…

  4. I was reading some of your older posts just before you posted this. The cycle of relief and bad news sounds so crushing. The one-year-anniversaries of my bad news are still upcoming… so I can only imagine how hard the day must have been – especially that, at the time, it seemed like kind-of-good-news.

    The “even though” questions seem so absurd. Am I sad that my mom died even though she had cancer? Yes, of course. I think people often don’t see babies as “real people” in this context, and thus do not understand the depth of our losses.

    • it was a weird day. good and bad all at once. the worry of stillbirth that came with it was overwhelming. But relief to know my baby had a chance.

      THe even though questions are pretty absurd- I don’t know why I feel like I need to validate my grief. I am fortunate that no one has outright said anything, so its really just me projecting. But I guess I needed the validation- so thank you!

  5. Waking up from a dying experience and being delivered a news that my Kevin would not survive. My first words to the doctor was, “please save him.” In a hunch, I knew that he might have severe problem if he survived. But, I wanted him to live and worry about the problem later. But, I never had a chance to worry, but to grief. Absolutely no control no bargain with death, let alone justice. 😦

    • “Absolutely no control no bargain with death, let alone justice.’ oh gosh, such true words. the lack of control can just eat me away. It is fascinating that you and I went through the same process, being told our baby would not survive. My process unrolled over several months, yours in just minutes. both started at 27 weeks. two extreme ends of the process of grieving, but yet, such similar feelings and experiences. no justice sometimes!

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