On Losing A Child: A Birth Story About Love, Loss and A Heartbreaking Choice (Part 1)
(This story is part one of a two-part series documenting our experience of losing a child and ending a wanted pregnancy for medical reasons. Read part two here).
If you’re a regular reader of this blog and you are signed up for my weekly emails, you might already know that our family is going through a tough time right now, to say the least.
Until a few weeks ago, I was pregnant and happily planning for our second little bundle of joy to arrive in September. But sadly, we lost our baby. I delivered him, stillborn at 24 weeks gestation. I never imagined I would say goodbye before I even had a chance to say hello.
I’ve been really nervous to open up about this. As you can imagine, I’m pretty vulnerable right now. But I feel my soul has been called to tell this story; To give a voice to others who have lost a child in a similar way and to honour my son and his life story, and the life story of all of the other babies who never made it past the womb.
As scary as it is to put myself out there, I felt it was important -no, necessary- to share this with you, as I have vowed to share all of the ups and downs of our journey through this blog: To tell our authentic story complete with all of the good, the bad and the ugly that comes along in life. And needless to say, this was a pretty major life event for our family.
Because while this is a homesteading blog first and foremost, it’s also a personal blog, and homesteading (or any other lifestyle, passion or hobby) doesn’t happen in a vacuum. It happens in real life, and as we all know, real life is what happens when we’re busy making other plans.
And so, as as I was busy making those other plans, dreaming of the day our new baby would come along and make our family complete, imagining how our life would be, writing my little blog and tending my little garden and planning the nursery that was meant for our peanut, real life came along, as it does, and brought the world as I know it crashing down around me.
Before I go on…
I want to warn you that the story I’m about to tell is deeply personal and involves not only losing a child, but making the choice to end a wanted pregnancy. In other words, it involves abortion.
I’m well aware that abortion is a polarizing topic, and some people might be so horrified at the mere mention of the word that they decide to leave this page and never return. But I also know that abortion is typically thought of as a solution to an unwanted pregnancy. My pregnancy was very much wanted and planned, and while I have always supported a woman’s right to choose, I never thought I would have to make the choice that I did.
I learned, having gone through this, that there are many others like me who have unexpectedly found themselves in the same devastating situation and who have had to make a compassionate but heartbreaking choice for their own unborn children. Their voices are mostly silent as the fear of backlash -of being on the receiving end of hate and vitriol- is too much to bear, especially when they’re already in a fragile state as they mourn the loss of their child.
My hope is that, through telling my own story I might be able to offer support and solidarity to anyone who has been or who finds themselves in a similar position, and to shed some light on a topic that is rarely spoken about and often misunderstood.
If you’re still with me, thank you. *Deep breath.* Here’s my story…
What we expected when we were expecting
My husband, Ryan and I gave birth to a beautiful, healthy baby girl in the summer of 2016. While Evelyn wasn’t exactly “planned,” she was most definitely wanted and I feel very strongly that she was destined to come into our lives when she did for a reason.
We always knew we wanted more than one child, and that we wanted them to be close in age so that they would grow up together and have a close relationship. My husband has a brother who is two years older than him and they have a great relationship. I was an only child growing up (I have a half brother and half sister, but they lived with my dad and I lived with my mom), so I wanted for my daughter what I always wished I had.
About a year after having our daughter, we started trying for another baby. This time we were actively trying. We really wanted our children to be no more than a couple years apart if possible, so we knew we needed to get pregnant soon if we were going to make that happen.
We tried for about 6 months before I finally got pregnant. I remember the day I took the test. I just had a feeling I was pregnant, and lo and behold, my dream had come true.
We were so excited to be welcoming another child into our lives. The timing was perfect too. I was due to give birth just 2 months after my daughter’s second birthday. They would indeed be two years apart, and I imagined the two of them growing up together, sharing all of the laughter and love and memories that siblings have the privilege of sharing with one another.
We were ecstatic, to say the least. But I was also feeling the full force of the negative effects of pregnancy: morning sickness, unpredictable emotions, worry, anxiety and exhaustion beyond words. I remembered feeling tired early on in my first pregnancy, but I was lucky enough to have an otherwise easy pregnancy with my daughter. In fact, I had felt better when I was pregnant with her than I did when I wasn’t pregnant! This was not the same.
Of course, I was reassured by everyone that it would pass, and that I was probably having a boy since the hormones seemed to be affecting my body differently this time around. We really wanted a boy.
There haven’t been any boys born on my mom’s side of the family in three generations, so there were lots of people rooting for a boy to break the cycle. But of course, I knew that it didn’t matter what we were having as long as our baby was healthy and able to live a full and happy life.
Even though I felt physically horrible throughout much of my pregnancy, I kept my eye on the prize, so to speak, and knew it would all be worth it in nine months when I got to see and hold the newest love of my life. Each passing day meant we were one day closer to completing our family, as we had pretty much decided we would stop at two children.
But as the days wore on, I felt worse and worse instead of better. I came down with all sorts of illnesses throughout the course of pregnancy, including a still-unexplained cough that led to me throwing my back out and being put on sick leave at 4 months pregnant.
But the physical ailments weren’t even the worst of it. What was much worse for me was the constant worry. I told my husband more than once that I was worried about this baby in a way I hadn’t been with our first child. Something deep down just didn’t feel right.
A Mother’s Intuition
Early on in my pregnancy, I read the book Wonder with my grade 5-7 class as the novel study component of their language arts curriculum. The book is about a boy named Auggie who was born with a condition called Treacher Collins Syndrome, which affects the development of bones and facial tissues, often resulting in a cleft palate, small jaw and chin, drooping eyes and missing or unusual ear formation, as well as a restricted air passage and possible vision and hearing loss. This also results in a plethora of surgeries over many years to try to correct these abnormalities. The story is ultimately about Auggie’s life and struggle to fit in and be accepted.
We had many discussions in class as we read through the book and learned more about Auggie’s condition. I remember one such discussion very vividly, when we talked about what causes birth defects. We talked about genes, chromosomes and how it’s really a miracle that so many babies are born “normal” considering all of the things that could go wrong.
The whole time we were reading this book and learning about various abnormalities and the suffering that some of these kids and their families endure as a result, I worried about my own baby and wondered what sort of life he would have if he was born like Auggie.
Fast forward to my 20 week ultrasound…
We arrived at the hospital, excited to find out the gender of our little babe. The last time I was pregnant, we had the doctor write the results in a card and we went out for a nice dinner at our favourite restaurant and revealed the results over appetizers. I remember the words “Congratulations, It’s a Girl!” scrolled across the inside of the card. It was one of the happiest moments of my life.
This time around, we’d made reservations at the same restaurant for the weekend after the ultrasound: Mother’s Day. We hoped to recreate our experience and go two-for-two, revealing this baby’s gender over Sunday brunch.
But as I lay there with the ultrasound technician scanning my belly for almost an hour searching for what I assumed was any confirmation of baby’s gender, I began to have my doubts that we would have any answers by Sunday.
I got a phone call from my midwife the following day about my results. She explained to me that not only could the technician not see the gender, she also couldn’t get a good view of the baby’s heart, spine or all four limbs. She advised me to go for blood tests as soon as possible to test for any sign of birth defects.
I got to the hospital within the hour and had blood drawn. Then I waited for one whole agonizing week to hear back about my results. When I finally got the phone call, I breathed a huge sigh of relief when the midwife said I tested completely normal and that all blood tests came back negative for any sign of a problem. She wasn’t even going to send me for another ultrasound since the blood tests seemed to confirm there was nothing wrong, but I asked for a follow-up anyway because I really wanted to find out the gender.
A week later, I went back for another ultrasound. I felt really good about this one and no longer had any thought in my mind that there might be something wrong with my child.
I chatted with the ultrasound tech -the same woman who gave me the first ultrasound- and I laughed and smiled and relaxed, sure that this time she would see the gender and I would be calling friends and family soon to announce the news.
But this ultrasound seemed to drag on forever just like the first one. I figured maybe that was just because I had the same technician and she liked to take her time and do a thorough job. She said she could see the heart this time and that everything looked healthy. But she still couldn’t get a view of the gender because the baby’s legs were crossed and the umbilical cord was blocking the rest.
I was sure everything was just fine and this baby’s gender was just meant to be a surprise. My Type A personality that made me like to plan and prepare and know exactly the way the future would unfold would just have to wait it out and find out at birth.
A few hours later, I got a phone call from the midwife again. I figured she was probably just calling to follow-up, but deep down I knew there was something wrong as soon as I saw the number pop up on my phone.
I was told that the technician’s notes about my ultrasound said that the baby’s spine “didn’t look as expected,” and that they still couldn’t see baby’s lower legs. The midwife told me I would need to travel to one of the larger cities nearby to go for another ultrasound with a perinatologist who specializes in these types of things. She reassured me that it was possible there was nothing wrong, but this could help confirm that.
My heart sank. But I stayed optimistic. I wanted badly to believe that everything was okay.
I was left with no real answers and resorted to Googling possible spine-related birth defects and other women’s experiences with ultrasound results like mine. I found all sorts of information on Spina Bifida and was sure that if my baby had this condition it could be fixed and he could go onto live a normal life. But I convinced myself that there was nothing actually wrong and instead thought about what I would say to the midwife who made me worry for no reason once we confirmed our baby was healthy.
The news no parent should ever have to hear
I was booked in for an ultrasound within the week, so we made plans to leave our daughter with my mom and travel to the city the night before, set on making a short vacation out of it since we were sure we would be returning with happy news anyway.
Even as Ryan and I were on the way to the hospital we laughed and joked. We sang and danced in the car together and even made plans to stop at the furniture store we passed on the way back to celebrate our good news and shop for our new home we bought to make room for the new addition to our family. I was still dreaming about shopping for the new nursery.
As we walked into the hospital, we reassured each other that we could handle whatever news we got that day. We would love and care for our baby no matter what.
After a few short minutes in the waiting room, we were ushered into the ultrasound room. I still felt okay at this point, but when the doctor came into the room, the mood changed immediately.
“Do you know why you’re here?” he asked me.
“I think so,” I responded, and proceeded to tell him what I knew about the previous scans.
While I tried to be upbeat about it, the tone in his voice immediately suggested that he was not so confident that all was right with our sweet baby. He spoke in the tone of voice of a man who had delivered bad news to parents like us many times in the past.
I gulped and tried to remember to take deep breaths as I lay down on the table. While he scanned my belly, his brows furrowed as he looked closely at each part of our baby’s anatomy. He didn’t say a word the whole time. Until…
Finally he broke his silence as he turned the screen toward us and pointed out the area where the lower spine should be, but wasn’t. He explained that the lower spine was missing. He also pointed out the baby’s legs and feet, which were indeed there, but were twisted and club-footed; A common symptom of spinal and nervous system defects, he explained.
“It’s quite severe,” he said matter-of-factly. And then again he said nothing, and went on examining with his brows furrowed and his eyes laser-focused on the computer screen.
I stared up at the clock as tears began to well in my eyes. I had to look at the clock because I couldn’t find it in me to turn and face my husband yet.
The clock’s hand went round and round in a fluid motion as time ticked on. I figured that clock was deliberately chosen for this room so that parents in our position wouldn’t have to listen to a ticking clock that mocked them as they waited with bated breath for answers; For any words of comfort or reassurance.
For us, those words of reassurance never came. The doctor went on to tell us that our baby was completely missing his lower spine along with his sacrum, and that he would be completely paralyzed below the waist. Not only would he never walk, but he would have no feeling or control at all from the waist down, meaning no control over his bladder, bowel or genitals, as well as a high probability of renal failure due to kidney cysts and possible neurological disorders caused by a malformed nervous system.
He said that something hadn’t developed correctly very early on in pregnancy, somewhere between 5 and 8 weeks. I racked my brain thinking back to what I was doing around the 5 to 8 week mark that might have caused something like this, but I couldn’t think of anything. I wasn’t even drinking coffee at that point. I was reading Wonder and crying for all of the families who had to endure what our family was now enduring.
He added that he still couldn’t tell us the baby’s gender as it was “too much of a mess” in that area of his body. Needless to say, the gender hardly mattered to us at this point .
The doctor said that in his 35 years of performing these types of scans, he had never seen a case quite like this where the spine stopped forming completely, mid-way up the baby’s back. It was also strange, he said, that the brain looked normal and that my blood tests all came back negative considering the severity of our baby’s abnormalities. But he was sure of the problems below the waist, and in no light terms explained to us that our child would have a very poor quality of life, full of many surgeries and a lot of suffering, if he was even able to survive birth and life thereafter.
I took a deep breath as I looked him in the eye and asked him “so what’s the next step?”
I still clung to hope that he would say something like “your baby will need surgery as soon as he’s born,” or “these are the things you can do throughout the remainder of your pregnancy to lessen the impact and give him the best chance in life.” But that’s not what he said.
“The next step is to choose whether you want to continue with this pregnancy knowing the kind of life this child will have, or whether you want to terminate now.”
A Heartbreaking Choice
I was in shock. On the surface I always knew this was a possibility, but now it was real. We were facing a decision that no parent should ever have to make; That no parent ever wants to make or plans on making, regardless of circumstance. We knew already what our decision would be in this case, but I couldn’t make myself say the words yet.
Ryan and I were taken to another room where we waited for a geneticist to meet with us and give us more information. We cried and held each other and whispered our deepest fears to each other.
“Not only is he going to suffer physically, but the world isn’t kind to handicapped people,” he said to me with tears in his eyes. I nodded in agreement.
Our choice didn’t seem like much of a choice at all, but we knew what it had to be. We loved our children too much to make them suffer. And despite wanting so desperately to have him and hold him and protect him from pain and cruelty and suffering forever, I knew I couldn’t. I couldn’t protect him from the pain he would experience and I couldn’t shelter him from the harsh realities of this world forever. We had to make the compassionate decision.
We made plans to terminate our pregnancy the following week. It was one of the most surreal weeks of my life.
I could still feel his little hands flailing around in my womb, letting me know he was there. I understood now why I only ever felt movement where his hands were, and had never actually felt him kick, because he couldn’t kick. And even as I felt his faint movements, I had no choice but to deal with the reality of our situation.
Ending A Wanted Pregnancy: From planning for a life to planning for a death
I spoke with my midwife about what to expect. I made plans with the geneticist to have his body autopsied after birth to try to determine a cause. I even had to make plans to have his body cremated, all while I could still feel him moving inside of me. It’s a feeling no one will ever understand unless they’ve been through it themselves. It’s absolutely gut-wrenching.
But I was also determined to make my last week with my child a positive, memorable one. I wanted to give him the best I possibly could in his short life. I played my favourite music loud and stood with my belly to the speaker as I sang along. I ate all of my favourite meals and fed us only the best food full of the best ingredients. And I tried to stay positive and calm so that he would be positive and calm. I definitely didn’t want to pass on any worry or anxiety to him in his final days. I wanted him to be content and at peace.
But the days ticked on, and soon it was time to head to the city again. This time when I returned home, I’d no longer be pregnant, and he’d no longer be with us.
My mother-in-law accompanied us to help take care of our daughter when it came time to go to the hospital. We were scheduled to check in at 3:00 on June 13 to receive the injection that would stop our baby’s heart.
As 3:00 ticked closer, my sister came to meet us and we spent our last few hours with the baby at the park, watching my daughter and all of the other able-bodied children laugh and run and play together. I imagined what life would be like for our unborn child if he did survive and go on to live a life where he felt trapped in his own body as he watched from the sidelines while everybody else did things he could only ever dream of doing. I felt so sad for him.
We went for lunch as a family and had a few more laughs, hugs and tears together before it was time to go. My heart was in my stomach as we drove to the hospital and made our way down the long corridor to the perinatal ward.
No sooner did we sit down to wait than we were summoned into the room where we would have the procedure to stop our baby’s heart.
The moment his heart stopped (and mine broke)
I lay down on the same table in the same room I was in the week earlier when we found out all was not well with our baby. I looked up at the clock again, but now time seemed to speed up instead of stand still. Everything felt rushed and seemed to be happening too quickly.
I requested a printout of our baby’s heartbeat before it stopped beating, so that one day I can have it tattooed onto my arm in honour and remembrance of my sweet child. Of course the nursing staff obliged, but after that there was nothing left to do but to have the injection.
I watched as the nurse readied the needle. Both my heart and my mind seemed to race in tandem. Thoughts filled my head. What would it feel like? Would I feel his soul leave my body?
I repeated the mantras “be at peace,” and “you’re free now” over and over in my mind as Ryan clutched my hand and I closed my eyes tight. The needle went in. It hurt. I’ve read other women’s accounts who’ve said the needle didn’t hurt that bad. But I thought it hurt. It hurt as the nurse was pulling it out more than anything, but maybe that’s just because that was also the moment my heart was breaking.
“It’s done,” the nurse said quietly, and then they packed up their instruments and left us alone together.
We wept. I hadn’t felt his soul leave my body when it happened. I didn’t know what to feel. I hadn’t even delivered him yet but he was gone, and somehow I knew that for me, this was the hardest part. Labour and delivery couldn’t compare to the pain I felt the moment we ended his life.
>> Click here to read Part Two of this story <<
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You are so brave for not only making the decision that you did for your son, but for disclosing the devastating circumstances to help others.
It has definitely been a frightening process and was definitely nerve-wracking to write and publish this story, but I followed the voice inside me that told me I had to do it for my son and for all the others out there who have lost a child in a similar way. Thank you for reading<3
I’m so sorry for the loss of your child and the agonizing choice you had to make. Thank you for sharing this deeply personal story.
Thank you for reading Arielle <3
Losing a child is devastating. My son was born on June 15, 1980 and was murdered on February 29, 1996. The pain and agony of his death and the closing of his casket was blinding but our love for him goes on. We were told that I would never carry him to term and might lose him . I was fortunate enough to have him for 15 years. My heart aches for all the moms who have lost a child before birth or had to make the choice to terminate or lost a child no matter what age. We do go on as we have no choice. Our other children and family need us. God Bless all of you who have suffered the loss of a child.
Oh Julie! My heart aches for you. I can’t even imagine your pain. Know that you are not alone in your sorrow and that your son is with you in spirit as is mine. Love and light to you.
Thank you brave mama for sharing your story.
Thank you for reading <3
I am paralyzed by your words throughout your journey. You spoke so well and perfectly to describe the feelings a mother goes through when we are forced to make this loving decision for our babies. I terminated my pregnancy in April, just 3 months ago, for heterotaxy. He was going to need 2 surgeries, on at birth and one a week or so later for his heart. He also had liver a bowel abnormalities, and potentially would have needed a liver transplant as well. This was all if he survived the Hell of his start of life. This is not anything a mother wishes for her child. We do indeed hold their pain so they do not have to. So much love to you. Peace and happiness will approach us with time as we remember the souls who now watch over us.
Oh Krista, thank you for reading and for sharing your own story of love and loss with me. There are so many others and fathers out there who have been through a similar situation and it’s so important that we know it’s okay to talk about it. There is nothing to be ashamed of. We made our decisions out of pure love for our children and will forever hold their pain so that they can be free. Peace and love to you and to our sweet angels in Heaven.
You are a brave and loving mother. I am so sorry that your sweet Phoenix was so sick and that you are missing him. What an impossible choice to have to make. You have faced a brutal situation with love in your heart and taken one loving and compassionate action. I wish we could always give our children all the gifts they deserve. It is such a sad thing to have to choose just one gift: life or peace, for they are both so precious and important. You chose well by your heart for the child that you have. I am so sorry that you had to choose at all.
Much love and support.
Thank you so much for your words of support Kate. I know we made the right choice and I have never once questioned or regret it. I’m just so sad we had to make the choice at all. Thank you for reaching out. <3