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Ventriculomegaly – The Story of Willow Charlize

Ventriculomegaly – The Story of Willow Charlize

Our 1 in 1000

I was once joyously naive. I didn’t think I was immune to things going wrong in pregnancy, but I simply didn’t acknowledge how unexplainably and devastatingly wrong they can go.

Even after an early miscarriage in my first pregnancy. It was heart-breaking but also encouraging to know I could fall pregnant. With my second pregnancy everything went uneventfully right. When I successfully fell pregnant first try for the third time, I entered pregnancy with the same fearlessness I had with her brother who was now nearly 3yrs old. I am so grateful to have had a positive experience leading into this pregnancy, but it also meant I was completely blindsided.

My 12-week ultrasound and NIPT test, all clear. Monthly blood tests normal. No other complications. I had been through this all before. 20 weeks came quickly and uneventfully. I embraced my growing bump as comfort that everything was progressing as it should. At 20 weeks, I was abruptly introduced to the endless possibilities of what can go wrong in pregnancy and birth. 20 weeks, I soon learnt, is the stage in pregnancy where anomalies and defects are commonly identified.

Heading into my 20-week appointment I was so excited to have my 3-year-old and his nanny see this baby. My son finally got to feel the jelly we had talked about, and got to watch this squirming baby I could feel getting stronger. The sonographer pointed out the parts of baby’s body and a healthy heartbeat. The appointment felt longer than previous experiences, but I was consumed watching my son looking at his future brother or sister.

Right at the end, the mention of something wrong. Of the ventricles in baby’s brain being enlarged and that doctors would need to review. I thought nothing of it. I assumed the brain was just growing ahead of schedule. The sonographer invited me to take a video and sent us on our way. Being ever positive, I was sure this was nothing to worry about.

With our son in the safe hands of nanny and poppy, my husband and I popped out to get our groceries. Finally, with some space, I told him not everything on the ultrasound was ok. That the ultrasound showed enlarged ventricles in the brain and a doctor would review and get back to us. My husband on the other hand needed to know what this might mean. A quick Google search and he found the word we would hear a couple hours later.

Ventriculomegaly. It’s a word I still struggle to say. To comprehend. To accept.

We were told that the Fetal Medical Unit would contact us to arrange a follow up. As devastating as this prospect was, I still felt hope. I didn’t expect more devastating words would make their way into this pregnancy or birth plan. Thinking back, the sound of the doctor’s voice over the phone saying “take care these coming days” will be forever etched in my memory as a truth I wasn’t ready to accept.

I went to work, shook my beautiful baby bump (Amy Poehler style), determined to enjoy the distraction of a postponed Christmas lunch. When asked excitedly “How did your scan go?”, my face said it all. I was completely shaken by the prospect. But I didn’t know enough. I wasn’t ready for more tears. I shared the video and diagnoses.

At 10am I got a call from the hospital asking me to come in. They gave me two options, and I chose the latter so I could enjoy lunch. I tried to force fear aside. When asked by colleagues if this was serious I only had one answer. I don’t know. My anxiety grew as the appointment approached, but reality doesn’t stop just because you want it to. I left work early with the reassurance that I was supported, and an ignorance of what I’d soon face.

Walking the maze of the hospital building for the first time with my husband was daunting, but nothing could have prepared us for what would be the longest and the shortest two and a half weeks of our lives, with multiple hospital visits. Leading into our first specialist appointment, we barely spoke. We didn’t want to be there. My legs shaky and my mouth dry. Simply being in this building felt unstable. We waited.

We finally got called into the ultrasound room. The memory feels dimly lit, like some kind of staged show. Again, a sonographer showed us what looked like a perfect 20-week ultrasound, tracking in all the right ways. Healthy heartbeat. Strong kicks fighting the sonographer. This was different though. Anxiety. Fear. Doubt. The sonographer asked what did we know so far. “Only what we found on Google.” It was explained that while Google will tell you that Ventriculomegaly is diagnosed as mild to severe, anything close to borderline normal is concerning. A condition that occurs in approximately one in 1,000 infants.

Just a few moments into our appointment the words terminate and amniocentesis entered the room. “So, this is serious then?” Yes. The tears being held back by the sonographer were enough to confirm that, but the words alone made me want to dissolve. The sonographer explained a long list of why it’s serious. An amniocentesis could provide answers about potential cause or infection, but it wouldn’t change the diagnoses. This wasn’t something that could be undone or medically treated, but an amino could help determine the viability and risks to future pregnancies.

Future pregnancies.

This pregnancy was supposed to complete our family. How could we possibly face this and try again? She left to give my husband and I space while she called in the specialist to look and make plans for an amnio.

My husband was holding so much strength for me but I sensed he saw the end. He was already preparing himself to say goodbye to this baby, the baby he was already so connected to and wanted. This couldn’t be happening. Remembering back the voice of the doctor who called following initial diagnoses, guiding me to take care these next days sticks with me.

I knew the chances of us having this baby were becoming less unrealistic. I needed answers before I could accept this was a “decision” we may have to make so our baby wouldn’t suffer. Walking out of hospital, passing others facing their own unknowns in the waiting room. Passing pregnant mums, mums with their newborns, their perceived blissful naivety. I wanted to break. To let everything out. I stumbled. I stepped. I somehow kept moving forward because that’s all I could do.

The next 5 days would feel like an out of control, out of body nightmare. Lost without direction. I didn’t want to see my reflection, looking aged and broken. A bump that still had life that I couldn’t ignore. It was a heavy haze that smothered every thought day and night, with a little reprieve from my 3-year-old who was both stretching my patience and bringing me desperate distraction and joy. My husband struggled to hold me with this physical heaviness between us. This unknown. I wished to miscarry. I begged for a miracle. I hoped for this decision to be taken from me.

I learnt that after 20 weeks, babies terminated for medical reasons are induced to be birthed. I was tormented knowing that my baby might survive birth. That they might cry, breathe, have a heartbeat, physical signs of life. I didn’t yet know that beyond 23 weeks a baby’s heart would be stopped days before birth. I thought we had time. We desperately chased a follow up so we could ask questions to make a plan. Without the amnio results we simply had to wait. If the amnio was cleared we might have a fighting chance. When we returned for the cleared amnio results we felt hope, but in another ultrasound the Venticulomegaly was worse.

The cut off to birth this baby, without other traumatic intervention, was that Sunday. Just 3 days away. One night to sleep on it. To make a final decision. To come to terms with terminating. To find the strength to give permission. To take away and carry this suffering. To say goodbye.

The next day we gave our decision. I signed forms. Our specialist met with the board to approve termination. We were booked and I was given the first pill to stop my body producing progesterone — a key hormone for maintaining a pregnancy. On Sunday, 31 January 2021, I woke early and took the final photos of my bump, one of just a few I took this pregnancy. My son hugging my belly, the only picture I have of the two together.

We returned to the hospital after dropping our son at his granny for the night. We were taken to the first of two private suites. Away from everyone else. A place where I would be induced. Pills inserted. Pills taken orally. I was determined to give this birth and baby everything. My love would carry me through as it did with our son.

Our beautiful baby was born in water 7 hours later en caul in the safety of her watery sack. When placed in my hands and onto my chest she cried out. My husband and I sobbing unashamedly. It was done. We had a little girl. Her breaths and movements slipped peacefully away to the sound of her brother singing and complaining that I was recording him, our voices reassuring her and telling her how deeply we love, and will always love her.

29cm tall. 19cm head circumference. 455gms. I dressed her. Wrapped her up. Held her. We took photos. Captured hand and footprints. Showered and went to sleep with her in the cuddle cot beside us. The next morning person after person came to check me. To give us support information. To tell us how beautiful our daughter is and that we could stay as long as we needed.

They organised a keepsake box and Heartfelt to take photos. They gave us a bears of hope bag and promised to look after our baby while we made arrangements. They were gentle, kind and everything I needed. I felt love and joy, relief and devastation. I had freed our daughter from suffering, and we were leaving with the scar of grief. Information to book and plan cremation and a ceremony. Information for support through SANDS and Red Nose. Paperwork to register our baby’s birth, and for bereavement leave. And the knowledge that retained placenta might, and ultimately did, bring us back to the hospital 3 weeks later.

This journey will always be deeply raw for me. As I write this, I am yet to face my daughter’s due date of 31 May 2021. Without my daughter growing in, or with me. I am learning to navigate both devastation and gratefulness in the same breath. I have a home. A husband. Family. A healthy son to focus on, to fight with, to teach, to play with. I am grateful that I had a daughter and that I had a choice to save her from suffering, a system to support me. I am grateful for other people’s stories that remind me and prepare me to feel every emotion. They remind me it’s ok to fall apart, feel angry, hurt, cheated, to have thoughts that contradict my values — but also to never let myself feel guilt. To remember that this was a decision made out of the deepest and strongest love. A love that enables me to endure every day.

So I share my story so you know you aren’t alone. So my daughter’s life and story can make a difference. So I can process these feelings and hope to break taboo. To build knowledge and understanding. To advocate for parents facing TFMR, undergoing IVF, infertility, miscarriage, stillbirth and neonatal death and this journey it projects you on.

Follow our story @with_love_willow

I have always wanted to write a story, but I never imagined it would start as a way to process my TFMR story. One of enduring grief through love, and advocating to support others and break taboo. To give life to this hidden space. Before now, my life has seen few hurdles and only a few blindsides. Finding other stories I can connect to in this journey has made me want to share my own in the hopes it makes some kind of difference.

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.