To Give and To Get

As a midwife pregnant with a child with Down Syndrome, I am privileged to have both given and received a Down Syndrome diagnosis.

I remember her birth story- it was her first, they were teachers.  She was 36weeks, just a hair shy of term and the baby came fast.  They had declined testing.  After the baby was born into my hands I lay her right up on her mother’s belly, skin to skin, to cheers and tears of delight from her parents.  As the nurse dried the baby off on mom’s belly, she looked at me whispering something.  It took a few beats for me to realize she was saying that the baby looked like “a downs baby.”  Since baby was fine, she stayed on mom for a bit, as the family oohed and aahed over her.  Whose eyes she had, which family chin she inherited.  She was beautiful and the parents loved her unconditionally.  And then we called the pediatricians to check her out- mostly under the guise that she was technically preterm.  I don’t think either of us felt qualified to inform the parents of our suspicion.  The pediatricians did an exam and one came over and started going over the baby’s features.  I remember her stammering and I think she mentioned Down Syndrome somewhere in her talking. It was awkward.  After they left, I sat down with the mom, who just looked confused, in shock.  I had a feeling she didn’t absorb any of it.  She needed more.  I told her in simple words without the medical jargon of single palmar creases and flattened nasal bridge, that they think her baby has Down Syndrome.  She was a little unbelieving at the time- but she heard it.  I remember I was positive- we still talked about who she looked like and how fine she was.  Dad was more immediately accepting of the diagnosis.  Baby had to go to the nursery for a sugar check because mom had gestational diabetes, so dad went with her.  When he came back, I caught him in the hallway.  Mom had had a lot of attention, but dad had been whisked away during those moments- so I stopped him and asked him how he was doing.  He said “So she has Down Syndrome- but she’s still our baby.”  He was just so loving and immediately accepting.

Now that I have been given the same diagnosis, I think I know what went through that mom’s mind in those first moments.  My diagnosis went from “there’s a 1/3 chance of some sort of major birth defect or chromosomal abnormality” based on the first trimester screen to “it’s Down Syndrome” based on the CVS results.  I had a weekend to think about all the possible outcomes- mostly I focused on trisomy 18 (my biggest fear) and Down Syndrome.  I didn’t think this baby was chromosomally normal (is that even the right term?).  I had seen too many results from those first trimester screens to know 1:3 does not bode well.  In a way I was hoping for Down Syndrome, because my baby had a better chance of living.  So when my midwife called my Monday afternoon in the middle of my work day and she said “It’s Down Syndrome,”  I actually was relieved.  I didn’t cry.  I said “ok….ok… Ok.  I can do this.”  My midwife was great.  She was nonjudgmental. She knew me.  We had talked for a long time after the abnormal first trimester screen. So she knew my thoughts and fears about all the possible diagnoses.  She asked what I wanted to do.   I told her I wanted to continue on- my husband and I had talked about it- which at the time was all theoretical, but in my new reality, continuing on was my first instinct.   She went on to talk about all the positive things I would experience.  “Babies with Down Syndrome are born without malice.” I would still experience all the joys of pregnancy.

In comparing my experience with my patient’s, I feel lucky.  I have so much more time to adjust.  I am grieving.  I am seeking information.  I am angry.  I am worried.   But I get to do this on my own time.  When I finally get to meet this baby, I can welcome him/her without feelings of loss.  The birth will be nothing but celebration.  I can’t imagine having to process all this and adjust to a newborn all at the same time.  My tradeoff is the worry I feel through the pregnancy.  I would have had a much more carefree pregnancy if I chose not to do testing.  But my birth will be even more joyful than I could ever have imagined.

I have had the pleasure of attending my patient’s third birth as well as her first.  She chose not to do testing during the pregnancy.  And she was nervous- in a way I thought I understood before, but really understand now.  She just wanted to meet this baby and make sure she was ok.  She wasn’t in full blown labor, but I admitted her and broke her bag of water to get things going.  I could see the relief on her face, when she knew I was going to help her meet her baby that day.  And it was wonderful.  Baby joined us after a fast labor and was just fine.  Her relief holding her in her arms and knowing she was ok, was immense.  I look forward to that feeling with my baby.

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2 thoughts on “To Give and To Get

  1. I just found your blog over at Roo’s… and I just started reading… and already I’m compelled to comment.
    I am 53 years old. My cousin Todd was born 10 months earlier than I was. My aunt was an older mom and Todd was born a Down’s baby.
    Growing up I spent each and every Sunday at his house; he and his mom lived with my grandfather in my dad’s family home in a small town in northern NJ. Those Sundays were/are some of the best memories I have of growing up, and Todd is the best part of each and every one.
    Even as a young child I knew he was special. I don’t remember ever discussing it with my parents; I sort of just knew, and when I was old enough, I recognized it as Down’s Syndrome.
    What I remember most, though, about Todd was his unflagging cheerfulness, his big smile, his hugs, his gymnastics (he LOVED doing no-handed cartwheels!), that small speech impediment that made his voice one I can STILL hear inside my head!
    As an adult what I remember is the sheer joy he had in just being. Not a care in the world, not a worry about taxes or politics or bullying. He smiled 24 hours a day.
    My aunt jumped on the Special Olympics bandwagon the minute it was created and I can’t recommend them enough to you. [My husband was a coach for many years and I’ve been blessed to have volunteered with him several times at the annual games here in NJ.] My aunt was bound and determined to make sure Todd had every opportunity to live a normal and complete life. In the 70’s she moved to Colorado, and they remained as active in their local Special Olympics programs as they were here in NJ.
    Todd went to college, attending a special program for the disabled, graduated and moved into an apartment on his own. He had a roommate who also had Down’s. They lived in clusters, two apartments for four special people, and a trainer who monitored them 24/7 in the third apartment.
    Todd had job after job, one with an manufacturing company where he worked on the assembly line, and several fast food jobs where he was bussing tables and carrying trays. He went white water rafting, traveled all over, spent time on the Naval base in Colorado Springs. He learned to take care of himself as best he could, to have as fulfilling a life as any one of us can lay claim to, and it was all thanks to my aunt who made DARN sure he’d be taken care of once she was gone.
    She died in 1998, and Todd survived her 8 more years, missing her every day.
    I miss him each and every day. I miss his voice and the Sundays and the memories, even though the last time we spent Sunday together was in the 70s!
    Your child will be as special as Todd was, as each and every Down’s baby is, and you will be blessed. You and your husband must be REALLY special people to be gifted with a baby as wonderful as I know yours will be.
    God bless.

  2. Pingback: World Down Syndrome Day 2015 | Expecting the Unexpected

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