The Hardest Decision I’ve Ever Made
By: Rebecca Stockwell
The scariest thing about going to my first support group was worrying that I would be told I didn’t belong because I had a termination for medical reasons.
I was scared my grief wouldn’t be seen as legitimate, that I would be condemned for making what I thought was the only decision I could make.
I was pregnant with my second child in 2010, and it was unexpected and a bit scary to think of having a 17-month-old and a newborn. We had just settled into the idea when I had my routine 19-week ultrasound. The ultrasound tech was not as chatty as she had been with my first pregnancy. When she left the room to get the radiologist, I knew something was wrong. She would go on to tell us that there was a problem with the kidney, maybe a cyst on the brain and that we would have to be seen at the larger teaching hospital about 35 minutes away.
This all happened on a Friday. I sat in the car with my husband and called my midwife’s office. I had to leave a message. I tried not to cry and tried to convey the urgency of being seen that day for a second opinion. I thought she might be able to call the other hospital and make a same day appointment.
The thought of waiting all weekend and not really knowing what was going on was terrifying.
I’m a nurse, so my nurse brain was running through all the scenarios. Could we deal with the medical complications? Would this mean a shorter life for the baby? What kinds of interventions would the baby need? Sometimes being a nurse is a blessing but, in this case, it was a curse. By some miracle of the universe, we were able to have a repeat ultrasound at the teaching hospital that day. After that, we would see the genetic specialist who would review the results with us.
I can remember thinking it was strange that the rest of the world didn’t stop. How could people go on with their lives when this was happening to me? I had to call work and tell them I wouldn’t be there at 3:00 pm. I had to arrange childcare for my one-year-old.
Sitting in the waiting room for the repeat ultrasound was terrible. It was hard not to cry. It was hard not to run out of there. It was hard thinking all the other people in the room were not facing anything as terrible- which probably wasn’t true, but in the moment that’s how I felt.
I remember watching the ultrasound screen and having to turn away as the tech was marking the abnormalities on the scan. I tried my best not to cry because we still didn’t know the extent of the problem. It’s a bit of a blur, but we were told the baby had nonfunctional kidneys which explained why the ultrasound felt different than with my first child. There wasn’t enough amniotic fluid so there wasn’t any cushion between the baby and the probe. We also learned there was probably a cyst on the brain, and they were unsure if some of the organs had formed. We were told the baby wouldn’t survive after birth. They were unsure if I would carry to term or if the baby would die before that.
We’ve all heard stories of miracles, of babies being born perfectly normal after receiving bad news. But this never felt like it would be the story for my baby.
I don’t remember what the genetic counselor said, but I do remember that she made us feel like the decision was ours and it would be received without judgement. We were given the option of early termination or we could wait and see what happened. We were given some time to talk in the room.
I really wanted to hold onto hope, but the thought of continuing to carry a baby who would ultimately die didn’t feel right to us. I was worried people would think we didn’t love the baby or we didn’t want the baby, but we decided to go ahead with early induction.
It didn’t feel like a decision to me, it felt like the only option. Every so often I have a fleeting thought, “did we do the right thing?” There is some evidence that before 22 weeks a baby’s nervous system isn’t developed enough to feel pain. That thought has brought me some comfort in the years since.
I started telling myself “we made the best decision we could with the information we had.” This is true of every parenting decision I have ever made, for any of my three children.
The only thing that felt like a decision was to have a birth or go to the operating room and have the baby removed. I initially wanted to go to the operating room, because I thought not seeing the baby would be less painful somehow. Someone, I’m not sure who, convinced me that the best option would be to be induced and deliver the baby. I’m grateful to the person who helped me make that decision and for the time I got to spend with my son after he was born. But that decision was hard. It was made a little easier because the operating room schedule might not accommodate us, meaning we would have to wait. We were up against a time constraint – this had to happen in the next 7-10 days or not at all due to state laws.
There are a few things that stick out to me from this time. We were not sent home with anything to read. There was a chance the induction couldn’t happen on Monday because “there is one doctor who doesn’t do these kinds of deliveries so if he’s working, you’ll have to wait.” That felt like a kick in the face for a parent trying to make a such a difficult decision.
I didn’t understand how a person could say that when this was the hardest decision I had ever made; how could that person judge a decision I was making. I still don’t understand.
That weekend, we put our daughter to bed each night, then went outside and sat mostly in silence by the fire. And we waited for Monday to come.
On Monday we saw an empathetic resident and were assured she would be the only doctor we had to deal with, not the normal plethora of doctors at a teaching hospital. The induction was two parts. She gave me a pill to take and then we had many hours of waiting before we had to go back to the hospital. Because the hospital is an hour from our home, we had to spend the time in the town around the hospital. Now every time I revisit one of those places, I’m reminded of this very difficult day I wish never existed. We also left the first office visit with a book about difficult decisions that I wish they had given to us on Friday. It addressed most of our questions. Before we left the office, I remember asking if the baby would be born alive and she told me, “Probably not.”
It was the hardest thing I had ever done in my life up to that point.
When we returned to the hospital, we were placed in the room with the most privacy. We had a wonderful nurse overnight who I never felt judged by. She listened and she made sure I had whatever I needed. I had no idea what we would do when the baby was born, if we would hold the baby, if we would take pictures, or even if we would have the baby cremated. You get three options, cremation, burial or have the hospital dispose of the baby.
When the baby was born, we found out he was a boy. He was born without thumbs. He was very tiny, and the nurse was unable to get good handprints. One of my regrets is not having those. I held him for several hours before we decided to go home, see our daughter and try to get some sleep. Our son was born at 4:04 am so we had been up more than 24 hours at that point.
The single hardest thing I have ever had to do is watch the nurse walk away with my son and know I would never see his tiny body again.
He is buried in a tiny casket with my great grandmother, a woman I only met once but someone I feel has always watched over my family.
I consented to an external autopsy only. I couldn’t stand the thought of him being cut open. Several days later, I received a call from the hospital asking if they could proceed with a full autopsy due to what they had found. They were pretty sure with a full autopsy they would be able to give us a diagnosis and therefore, the odds if this would happen during a subsequent pregnancy. With some hesitation, I consented.
I still have a hard time calling it an abortion; that doesn’t feel like the truth. Nine years later, I think we made the best decision we could.
I miss my son every day, and when other children that are the same age are hitting milestones it gets to me. Sometimes, my kids will be playing together (I have one rainbow baby), and it just kills me that he’s not there. My husband and I lean into our story as much as possible, but the word abortion doesn’t feel like it fits our story. The support group leader at the group I went to once said, “We need a different word instead of choice; choice is not the right word.” I agree.
About Rebecca Stockwell
Rebecca, RN, is the author of the “Guide for Trusting You Body After Miscarriage.” Stockwell’s own experience with pregnancy loss, and insights from other women who have lost babies during pregnancy, prompted her to create the guide, which is aimed at helping bereaved mamas feel in control of their bodies again.
Stockwell has enjoyed a career as nurse since 2005, which helped feed her desire for preventative health and wellness as a means to living her most fulfilled and joyful life. She is an avid gardener and fitness enthusiast, and is training for her first triathlon this spring.
Stockwell lives in Vermont with her husband and two daughters.
The Guide can be downloaded at https://linktr.ee/rmstockwell.followyourarrow
These are controversial topics and many that people don’t realize other families face.
Share’s mission is to support those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth, or in the first few months of life. Share does not take a political stand on these issues. Share is not responsible for guiding or counseling families in their decision-making process. We all grieve and mourn for our babies. Some of our parents have had to choose the day that they were going to lose their baby. But the truth is still: each family wanted and love their babies. We all search for support, healing and hope. All grieving parents deserve that.
As a support organization it is always our goal to provide a safe and compassionate place for every family who has suffered the great loss of their baby.
We hope this conversation allows for continued healing and an understanding from others of the great need for long-term support for every family making difficult decisions. If you are in need of support after making the decision to terminate for medical reasons, please reach out to our Bereavement Care Manager at info@nationalshare.org or call 800-821-6819.