Links to Amazon on this blog are affiliate links*

Severe Ventriculomegaly – The Story of Breeze

TFMR Severe Ventriculomegaly

The doctor walked in, pulled up a chair close to me and looked me in the eyes. She said…

“I’m concerned that this baby will not survive. There are many things wrong here and I will begin with the most severe.

Both fluid ventricles in the brain are significantly bigger than normal, one measuring 26 mm in diameter and the other 15 mm, which is considered severe.

This puts lots of pressure on the brain and constricts normal growth. Its’s called ventriculomegaly and it also causes macrocephaly, enlargement of the head.

The cerebellum appears small, the eyes appear further apart than normal, one kidney appears to be missing, there is a single umbilical artery.

It is likely the baby will die during the pregnancy or shortly after birth and if not, the quality of life will be very, very poor.”

I don’t even remember the doctor leaving the room, I just fell into my mom’s arms crying.

If I ever felt like a zombie or the walking dead, that was it.

When I remember that moment, I get angry that they can deliver news like that and then just walk away.

It felt like a gut punch to my life and leaving me alone after that was just cruel.  

The thought of my baby dying inside me completely petrified me, but still I clung onto some hope to hear some good news in all the bad.

I was scheduled to see a genetics counselor in three days, and I didn’t understand what the genetics counselor was going to do for me. It felt like we were in no mans land not knowing what to do.

Waiting was pure torture, but I still went to work to avoid setting off alarm bells. I’m sure I looked like a ghost that week.

Come Thursday, I showed up for the genetics counselor appointment.

They extended regret for having met under these circumstances and explained they were there to answer questions and provide support.

They seemed very kind and compassionate.

The counselor reviewed the level two scan report with me again, and revealed some more damning news- our baby girl had many cysts in her brain, in the ventricles and brain tissue.

She explained what could be expected if the baby survived; multiple surgeries to reduce pressure on the brain, possible malnourishment, due to my single umbilical artery, seizures, difficulty breathing, eating, talking, etc., and that’s only IF she lived.

I think that’s when I knew there was no hope. People always try to be positive when you’re down, but sometimes you know the ending isn’t good, and the hopeful messages aren’t quite what you need.

By the end of that appointment I knew what we had to do.

It’s a strange feeling.

No one made me do it, and even I didn’t want to do it, but I was a dealt a very statistically unlikely hand and there was NO good ending- just one kind of ending I could control.

People always call it a “choice” but my heart tells me I didn’t have a choice.

I didn’t have the choice to have a healthy baby, a happy pregnancy, the gift of a first child, a baby shower, a happy baby story.

I got a very sick baby and no explanation.

I accepted the counselor’s offer to undergo a fetal MRI and a chromosome test, but I knew none of it would change the prognosis, so arranged to see my OB to discuss termination.

I could undergo labour and delivery, or a D&E (Dilation and Evacuation) for which you’re put to sleep but don’t get to see or hold your baby.

This conversation was very difficult because I hadn’t even grasped the fact that I had to terminate my pregnancy.

Just one week ago we were dancing around pink smoke.

Ultimately, the thought of no physical pain and waking up from this nightmare after a short surgery sounded much better than agonizing to birth a stillborn baby.

I still hold some shame in my decision to pursue the D&E because I know many moms choose to labour and hold their babies.

Would I have loved to hold my baby? Of course, but I was not mentally prepared to give birth. It felt too soon and the thought of enduring equal amounts of physical pain to match my emotional pain felt impossible.

I also thought that labouring to deliver my baby would further traumatize me.

I know the decision to have a D&E was an act of mercy on myself. So, I chose to just wake up on April 3, 2019 and I told myself, after this, the healing can begin.

I arrived two hours before the procedure on April 3rd with my partner and mom who were so amazing that day.

I sobbed the entire time, mostly because I knew those were my final moments with my baby and I didn’t want to it to end this way.

There I was in pre-op, in a gown in my hospital bed with a nurse who acted clueless, not saying a word but giving me the necessary pills, and seemed surprised when she noticed my crying.

I wondered what they were thinking.

Did they think I was just another abortion?

I personally do not refer to my experience as an abortion. I’ve learned that other women also do not use this terminology.

I chose to label my experience as a termination of a very wanted pregnancy for medical reasons. The terminology is important.

They wheeled me away and parked me near a tall narrow window before the operating room.

It was quiet and peaceful, and that is where I said my final goodbyes.

I put my hands on my belly and tried to channel my thoughts to my baby girl.

I told her I loved her dearly, that I was sorry and that I was setting her free today. I told her I would never forget her, and I asked her to please go to sleep. I never felt her move again and that moment still brings me a lot of comfort.

They wheeled me into the operating room. I was trembling, cold, and the room felt frightening. The thought of something happening to you when you’re unconscious is terrifying.

I’m not sure where your soul goes when you’re out like that, but I chose to think I was with my baby.

I woke up slowly in a different room beside a nurse and, as soon as I realized, I was awake I reached for my belly.

I knew right away we weren’t together anymore.

My belly was still round but it felt empty and I knew her spirit had gone.

That day I felt an intense relief that carried me through the day. I was relieved to have taken a step towards remedying our circumstance and beginning our journey to healing.

My boyfriend came in as soon as they let him and we hugged each other so tightly. We had sad tears from losing our baby but also tears of relief from still having each other.

My relief quickly turned to guilt and remorse.

I questioned my decision, whether I could have really had a baby after nine months, if I was too quick to decide, if I was too cold to have decided, how I could live with this on my chest, how I would never see her face or touch her hands and feet.

The thought of having hurt her clouded all the acts of love and I needed to remind myself I wasn’t evil.

I’ve never been to the dark place before, but I’ve learned you can’t imagine it unless you’ve been there.

Where you learn how utterly devastating, life shattering and hopeless it feels.

I felt like my life was over. I wasn’t suicidal, but I didn’t want to live.

All my thoughts were of her dying. I had a very hard time believing it actually happened and I had to catch myself to stop wishing it away, trying to change that week somehow in my head.

There was no explanation, but I kept searching for one.

The doctors couldn’t find out what caused the abnormalities.

They told me it could be due to an infection or bodily harm since her chromosomal test appeared normal, but I tested negative for all of their virus tests and I never had a bodily injury.

We later learned the MRI revealed even more abnormalities in her brain.

How did my baby become so unhealthy? I cried all day long; when I woke up, when I made toast, when I watched tv, when I showered, when I drove the car, when I was at the gym, when I pet the cat, when I looked at the sky, when I talked to anyone… I can’t believe how many tears poured out.

I was desperate so I called several organizations and found numerous support groups until I found the right one, an 8-week perinatal loss group at the Roger Neilson House.

Some people say it was brave to seek help, but it was a matter of survival.

It’s hard to explain what losing a baby this way feels like. It consumes all your energy and joy. It makes a horrible situation even more mortifying.

My heart sinks when I see or hear about newborns or pregnancy. I can’t go around telling everyone precisely how I’m feeling when triggers happen, but I’m very disturbed when I’m caught in those situations.

I’ve been told it gets better and I do feel it getting better, but there’s a big scar.

In the support group I met several other women who clearly loved their babies and had made the same decision to terminate for medical reasons.

I saw myself in them and it changed my narrative away from having felt evil and selfish.

I saw a therapist for a few weeks who helped me work on stopping my negative thoughts.

We did activities every week like writing to your baby, linking objects and openly discussing some topics, often with lots of tears.

I also read The Baby Loss Guide by Zoë Clark-Coates every night.

I have no clue how I would feel today had I not done all these things.

You may notice I didn’t mention my partner much in this phase of my grief, and that’s because I was too spent to notice anyone or anything but myself and my sadness.

All my energy was spent on my grief and there was none left for me to help him.

Nonetheless he held me every time I cried and didn’t say anything when I was clearly eating all my emotions.

We’ve truly grown stronger as a couple.

I did a lot of things to memorialize my baby, such as make a memory book, frame pictures, post on social media, engrave a necklace, create artwork, release butterflies, write her letters, help others, and soon plant a tree in her memory on what should have been my due date.

Most importantly we named her:  Breeze Gauthier-Bouthiette.

TFMR Severe Ventriculomegaly

She’s registered as having been our child and I keep her ashes at home. I really liked names inspired by nature and now in hindsight, it’s very symbolic of her legacy.

I feel a secret joy when people unknowingly say her name in conversation.

All this leads me to where I am now, still in the aftermath of what should have been my pregnancy but healing slowly.

I can’t believe its been almost 4 months; trauma has a way of manipulating time. I’ve been back at work and going through the motions, reshaping my vision for my life.

I’ll always wonder what if, but not what if we didn’t terminate, rather what if we never got bad news.

Breeze will always be in my heart and memories and I will carry her in my soul for eternity.

So, if you ask how many children I have, the answer is 1 little girl in heaven.

TFMR Severe Ventriculomegaly

I’m a 29 year old Canadian, living in Ontario with my loving man partner and cat. We’re adventurous foodies who work hard and love travelling the world together when we can get away from the hustle.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

Share your story by clicking above.

Add your angel to the remembrance page by clicking above.

termination for medical reasons Severe Ventriculomegaly