When the Personal Becomes Political

 

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This is a photo of me this morning. In it I am 18 weeks pregnant with our little girl. I have known since Christmas Day that we were pregnant with our 3rd child. I have always known I wanted at least 3 children. My childhood best-friend came from a family of 4 and I always wanted to be at her house.I thrive in chaos – the more I have going on –  the better. So for the last 4 months while extremely nauseous and tired, I have been so happy. As soon as we found out she was a girl we knew her name would be Dorothy after my Grandmother.

On Wednesday, we went in for our Anatomy Scan. Ultrasound is not my favorite thing, at all! I tend to be a bit of a hippy about these things and I always wish for less testing, less poking, less prodding. But I am 38 years old and I have had 2 miscarriages, one that was in my second trimester so I have gotten used to these things and for the most part have a lot of gratitude that I have access to fantastic pre-natal care.

On the screen, we saw Dorothy moving around. The ultrasound tech commented a few times on her size, she was measuring more like 19.5 weeks. I have big babies so I wasn’t surprised. We heard her heart beat. The sounds immediately put me at ease. Her legs looked long and so did her arms. She had 2 arms, 2 hands, 2 feet, a perfect looking head and all the parts they are looking for. I always like to see the spine. It is so beautiful and long.

The scan was moving along fairly quickly. And then we came to Dorothy’s heart. The tech stopped talking and starting to look at her screen more closely. She then changed cameras and tried applying a little more pressure to get Dorothy to move. She spent about 20 minutes looking at her little heart.It was clear something was not quite right. I asked Gary to pass me my phone and I texted him even though he was right next to me “something is wrong”. He agreed. Shortly after the Doctor came in the room. Before he even began to also look at the baby’s heart, he told us in the kindest way possible that our baby’s heart was not growing. We have a right side to our heart and a left side and Dorothy’s left side had not grown.

Very soon after we were in a taxi to Mt Sinai to the Pediatric Cardiology department. Somehow those 70 blocks in midday traffic went by so fast. We went to get a fetal echo-cardiogram which is essentially a more extensive ultrasound with a Pediatric Cardiologist… I laid on the table for the ultrasound tech at the hospital which she looked closely at our baby’s heart. About 45 minutes later, the Cardiologist came in ( she had been watching the sonogram on the computer in another room) to continue the ultrasound. She was looking so closely,calculating so many measurements , over and over again. I was laying there crying as quietly as I could and praying and hoping for our baby. I recalled reading a story somewhere not that long ago where a baby had an operation on her heart while still in her mother’s belly. I thought of friends I know who’s children have had successful heart surgeries. I thought of how we live in New York City and have access to the best care anywhere.

After the ultrasound, I got dressed and we headed into the doctor’s office. As soon as we sat down she confirmed “ Your baby has a severe and extremely rare heart condition”. She drew us pictures of the heart and explained how a fetal heart differs from our hearts. She explained the right side’s job and the left’s side job. She then went on to explain what would happen if I carried Dorothy to term. She would be born. She would have no colostrum, no breast milk, no formula, nothing for 4 days. We would essentially starve her while she would be closely monitored. And then on day 4 of life she would undergo a very risky surgery that didn’t entirely fix the problem but would help Dorothy live and if she survived that she would have another surgery 3 months later and it goes on and on like this for years. A life of suffering from day one.

As my mind was racing in shock, I couldn’t get over the idea of not feeding my baby. I interrupted and said “not even through a tube?”. The doctor replied “No, no food at all.” I thought back to Louis’s and Arthur’s first few days of life and how they literally nursed around the clock. And then I thought of Louis and Arthur and how I would be pretty much living at the hospital and how much I would miss them and how much they would miss me. I saw them having breakfast without me, going to school without me and going to bed without me.I thought of how Gary and I would trade shifts at home and at the hospital and how we would hardly ever be together.  And in that moment my heart broke. That heavy feeling you get where all of the sudden your chest aches so much, it feels like it carries the entire weight of your body.And I couldn’t really swallow because somehow my heart all of the sudden also resided in my throat. And then I forgot how to breathe. And the doctor was still talking.

Now we are waiting to terminate our pregnancy. We feel like we are in purgatory. Time has never moved more slowly. I am used to wishing there were more hours in everyday. And now I can’t believe how long the days can be.  Some people refer to this as an ‘elective’ surgery. But something about this feels far from elective. We want this baby as much as we wanted Louis, as much as we wanted Arthur, as much as we wanted the babies we lost when we miscarried.

Coincidentally, today I read an article in The Washington Post about a law passed in Indiana that will not allow mothers like me to make this choice. What kind of world are we living in where we do not trust mothers to make the best choices for her family, her baby and herself?  It has always been my belief that God and Science are deeply connected. God is in everything therefore God is in Science. I am so perplexed by people who point to their religion as the reason for creating these laws when it is so clear it is politics and deep misogyny. Our hearts are broken. We feel we are living in a nightmare. I have not slept since Wednesday. The idea that a woman in my country suffering the way I am suffering would not have access to care close to her home and support network is unacceptable. No one wants to make these choices. No one. This is not a negligent, unloving  or flippant choice.This is one of the most heart wrenching moments of our life. I have had a second a trimester miscarriage. I know how awful I will feel physically ( not to mention emotionally, spiritually and psychologically) for weeks. My body will be in a postpartum state with no baby in my arms. My milk may come in. And I will walk around empty still looking visibly pregnant to the world.

I have always been pro-choice. I was raised in a pro-choice family. But I have thought much more about this law as it pertains to women collectively than to me. We must change the story of Abortion. Abortion is not just people ending their unwanted pregnancies. And this is why I am sharing such a personal private moment in my life. Because my personal is deeply political today.

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14 thoughts on “When the Personal Becomes Political

  1. Dearest Karyn,
    Thank you for letting us all into your world and sharing this story. This brave act and the horrible decision you had to make truly embody motherhood itself: selflessness, pain, love, strength, and hope.
    The tribe, the mothers of the world, cry with you today. In Dorothy’s honor, I hope that we can make forward progress so the girls and future mothers of world face a different political situation.
    I will hold you and sweet Dorothy in the light.
    Love,
    AKH

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  2. Thank you for writing and sharing. This aspect of why choice is so important to women and our families doesn’t get enough attention. It is brave and generous of you to tell your story so clearly and powerfully. May you have strength and grace while you heal.

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  3. Just wanted to say I shed big tears with you reading this and that you are not alone. It was just before Mother’s Day 2006, just two weeks before my wedding, that I got similar news at 20 weeks. There are no words to describe the pain of the days that followed. And it was an unbearably lonely experience. Thank you for your bravery in writing this and for speaking out for the rest of us. Prayers for your Dorothy.

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  4. How heartbreaking. I don’t know you at all, but your story is very heart-wrenching, especially as I hold my own newborn girl. Praying for you and your daughter Dorothy. May you get to hold her one day.

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  5. KStarr, you are a brave, fearless, & incredibly insightful Mama. I cried reading this. For your hurt. For the collective outrage. For the policization of such an intimate and terrible decision. Thank you for your voice and your candor. You are remarkable.

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  6. This was so brave, and so beautifully written. Thank you for giving a voice to women who are too afraid to speak out, but who have gone through this same situation… The war on women has got to end.

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  7. I am so so sorry to hear your story. I had a similar situation at 15 weeks, I discovered my first born was not ‘compatible with life’ and would forever be my first unborn. 6 years and one 5 year old little boy later, I still tear up at the memory. I don’t care what the ‘pro-life’ argument is, it is a terrible position to be put in. It was an incredibly painful time for me and my husband. I would challenge anyone to want to bring a child in to the world, knowing that child’s life will be either cut severely short or a life of surgeries and pain. Making the most terrible decision we have had to make also makes the best decision for our children. Love and light to you and your family.

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  8. I know your pain. You are not alone. We terminated a very very much wanted pregnancy at 27 weeks last June due to our son having major brain malformation that went undetected until a 24wk sonogram. I know this is the worst you will ever feel but over time it will get better, I promise. You will miss your little girls until your last days but you will be at peace knowing that you took on all of the suffering that she would have to endure had she made it into this world. You are sparing her of all the terrible suffering she would have to endure with surgery and surgery, starvation and pain. If you need anyone to talk to there is a facebook group I have joined where you will find love and understanding and a whole community of beautiful people who have been in the place you are at now. The political aspect of all of this has hit home so hard these past few months and I is so upsetting to see people judge based on what they “think” happens when someone wants an abortion. So thank you for putting yourself out there! All of us who have gone through it appreciate your vulnerability more than you know! Much love and healing to you.

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  9. I am so sorry for your loss. It is so wrenching read your story, and think about how politicians are getting in the middle of parents making the best decision for their children and themselves. It is really forcing everyone to follow the practices of a subset of one religion, whether or not we are of a religion that follows the bible, or whether our denomination interprets the same way as they do.
    I too have had to say goodbye to two babies because they had sad prenatal diagnoses. My thoughts are with you right now, as you are in the midst of the hardest time in your life.
    There is a private support group on Facebook called Ending a Wanted Pregnancy for parents who have had to make this sad decision. (Fathers and mothers, thought it tends to be a lot of mothers). It is moderated. If you think it would be helpful to you, you can write the moderators your story at info@endingawantedpregnancy.com, they can then add you to the group.

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  10. I had a miscarriage in July. First trimester, but my first. As I lay on the table after they had administered the medication to start contractions, my doctor explained to me that this is what would be affected by any anti-abortion laws. A choice I didn’t even want to be making, but that I needed to survive, would be taken from me. That was it for me. Thank you for sharing and standing up for these vital rights. You are amazing. My heart deeply aches for you and your family. I’m wishing you peace and all of us the continued right to make the right choices for your health and our families.

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  11. Thank you for sharing this. It reminds me how so many women’s heartbreaking losses, experiences, and decisions are hidden, unperceived by the rest of the world. I stand with you completely in all your beliefs and your reasons for sharing this, but it still was an incredibly brave and selfless thing to do, and so moving to read your account. Sending love to your boys, your husband, little Dorothy, and especially to you.

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  12. Thank you for sharing your story. I feel your heartbreak. Stay strong my dear one, you know what you are doing is the right thing, to stop your daughter from suffering , but yes , what a sacrifice to make. You love your girl and you are surrounded by love. Keep and hold that love and let her go❤️❤️❤️❤️❤️❤️❤️

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