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