I Am Strong – I Continued to Live

by January Harshe on October 19, 2015

I am strong because at 36 weeks, I gave birth to a baby who I knew would not be with me very long.

I am strong because at my 20 week ultrasound, there were a few “little things” that looked off and a possibility for Trisomy 21. Even though I am 31 years old and had less than a 1% chance of having a baby with Down’s Syndrome, I had to reimagine our lives together as a family of four. I pictured a life where our family might be different, and our daily lives would be challenging, but beautiful. I cried, yelled, and then began to embrace the beautiful boy who was coming to us.

I am strong because at 24 weeks we saw dilation in my son’s brain, and consented to a long needle into my stomach, to check the genetic material in my son’s amniotic fluid. I soon learned my son did not have an extra chromosome, but instead was missing very important genetic information on his first chromosome, and was carrying extra genetic material from his fourth. I learned that no one was documented to have both of those issues combined, but each on their own is quite severe. There was no guidebook for this.

I am strong because I began to transition to care with highly specialized doctors, and prepare for a birth at one of the top five hospital in the country for children like mine. I let go of my dreams of a water birth at home, even though I, a 31 year old, fully healthy prenatal yoga teacher was capable to birth without interventions. But my son needed much more, and I would lay down my life for him.

I am strong because I was poked, prodded, MRI-ed, and transferred many times from doctors and midwives who had not worked with cases like his. I was starting to feel untouchable. Like a liability no one wanted. How many doctors’ office ceilings did I stare at, tables did I lay on, machines did I get scanned by? I don’t know.

I am strong because after my 32 week ultrasound, the maternal fetal medicine doctor got up out of his chair, and suggested we “make plans in case he doesn’t make it.” And then he left the room, and transferred us on again.

I am strong because as the weeks went on, I watched my son’s life rapidly unravel around me.

I am strong because at 33 weeks I was taken into a conference room at Children’s Hospital of Colorado. I sat with my husband and my midwife, as my mouth became increasingly dry and eyes wet, and looked across the table into 16 eyes of specialists, who seemed surprised that things had taken such a turn for the worst. I saw images of my son’s brain, with no neurons growing, having never branched out as they should. They were shocked. So was I. I allowed it to wash over me. I listened without crying, saving my breakdown for the moment when I escaped from that awful room.

I am strong because I had to then, at 33 weeks, choose what to do next. Subject him to a short and miserable life kept alive by machines, and surgeries? Choose to interrupt the pregnancy so he would not have to suffer? Oh the irony of having moved to Denver, CO this year. 20 minutes from the best Children’s Hospital in the US, and 30 minutes from the only doctor in the country who will perform late term abortions for chromosomal abnormalities.

I am strong because at 34 weeks we decided to press on and let our sweet Jack decide when he would come on his own, and when he would pass… on his own. We were told, in that case, we would have about a week with him.

I am strong because at 36 weeks, I went into labor. I watched them bring the infant warmer into the room, and listened to it beep as my contractions, which were strong at home, began to stall in this sterile and scary environment. I was told that instead of days with Jack, I would have hours. Maybe.

I am strong because I went through an incredibly painful labor anyway, knowing I would not get the reward of a plump and healthy baby. I was hooked up to pitocin as the impatient OB on call rushed me along. He said I would be there for three days if I didn’t.

I would have been happy to have three more days with Jack. My body knew this, and held on tight to stall labor and to give us more time together.

I am strong because I labored on, without an epidural.

I am strong because I had to hold my son’s lifeless body, as he was born still on August 20, 4 weeks before his due date.

I am strong because as everyone cried and left the room, I did not cry. I needed to be a mother for my son. As my husband fell apart next to me, I spoke calmly to Jack as I held him, and told him how loved he was, how brave his was, and how proud we were of him. I thanked him for showing me how strong I could be in the midst of physical and emotional pain.

I am strong because I prayed for a miracle. And the miracle was not that Jack lived, it was that I continued to live, even when he passed away.

I am strong because I had to go home to hug my three year old, and explain that Jack did not come home with us.

I am strong because when he asks me if I am sad, I say yes.

I am strong because I will tell his story. Our story. He will be known for the beautiful boy that he is, not a baby forgotten or never spoken about.

You are strong for opening your heart and reading this. You are strong for listening to a story about a baby who doesn’t make it, which is an unthinkable tragedy.

If you have had a high risk pregnancy, or a child whose genetic blueprints are different… you are a warrior. If you have had to consider a life for your child so different from what you imagined, you amaze me. If you have had to face your child’s death, you are an incredible force of maternal nature, and I see you. I see you and the incredible effort it is just to wake up. Brush teeth. Get dressed. Get out the door. Smile. Cry. Walk. Eat. Breathe. Live anyway. Your strength inspires me.

Logan Kinney, MA, RYT, RPYT

miraclemama.memiraclemama

{ 9 comments… read them below or add one }

Merry March 25, 2017 at 3:54 pm

I love the title of this post. You are strong because you continued on. You gave your son a chance at life, although it would be short. And you continued to live after, to inspire so many.

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Sharon March 28, 2017 at 11:13 pm

You are strong. And that will help you somehow navigate this uncharted path. Jack knew nothing but love and comfort. Thank you for sharing him with us. And inspiring me to share my own stillbirth story here.

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Kathryn November 5, 2017 at 11:27 pm

I am SO sorry, this had to have been the hardest thing you will ever have to do. Thank you for sharing your story.

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Mercedes November 6, 2017 at 1:46 am

Oh, Momma, you are undeniably STRONG. You chose life, knowing the heartbraking road ahead. Your baby boy is so loved and will continue to live in your heart ❤ Thank you for sharing your story..

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Jennifer November 6, 2017 at 3:57 am

20 weeks. I went alone. My fourth baby. I thought i would rush through the ultrasound and get back to work, a hand full of photos to show my other little ones.
It was clear very quickly that the photos I would be leaving with were of things I still struggle to find the words to explain to them.
I don’t know why babies ‘get borned with broken parts’
Days later, that number- 20- would be spoken to me again and again-
My baby would have a 20% chance of surviving her defects.
She was born with RAI Heterotaxy, and a whole alphabet of heart defects, organs misshapen, missing.
In those weeks of waiting- I scoured the internet for birth stories like yours.
I wasn’t looking for happy endings, I have had three, beautiful natural births. I was looking instead for how to stay strong enough to say goodbye. To find the secret to surrendering to labor that would end with my baby being taken away to suffer strangers and pain and procedures, and terrified that the cost of the choice to stay pregnant- to take every moment I could get with her- would be that she would pass alone in the middle of a medical assualt. Though the things that are done can be life saving, they are no less terrifying, or painful- for new skin, for a new soul to submit to. I’ve learned that there is no secret answer…but instead an abiding and profound truth that our babies may grow in and leave our bodies, but they live forever in our hearts.
Every story matters. These birth stories matter SO much.
Thank you for the courage to share yours💖

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Jeannie November 6, 2017 at 10:15 am

You are an incredible brave beautiful mother. I am so sorry you had to say goodbye to your amazing son Jack. Sending you and yours understanding and love, and remembering your Jack with you. His life has touched me.

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Christina November 6, 2017 at 2:35 pm

Such a beautifully written post, you are so so strong. My daughter also had genetic issues and we went through a similar course during our pregnancy. Although our stories ended differently I️ know all too well the worry every single day, every single appointment and scan.

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JustHeather November 8, 2017 at 2:25 pm

<3<3<3

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Amber November 8, 2017 at 11:42 pm

Thank you for sharing your story. I am currently pregnant with a son with Trisomy 21 and he is having some challenges that could require premature delivery. It is a very hard time for us and I am thankful to be witness to your story of strength- it helps me with my own.

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