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Willow's Story

Updated: May 27, 2023



Willow Charlize Mallia ~ 31/01/2021 Daughter to Ben & Jules, Sister to Xavier

Our little willow tree, to the wind we set you free! In our hearts and dreams, forever you will be.



Willow was planned. She was supposed to be the completing piece of our puzzle, to some extent she is, but the picture isn’t as we hoped. She was our 1 in 1000. No matter how many times I try, and no matter what order I place the feelings, memories, and dreams in, I can’t complete the picture. The picture that lives wholly inside me and my experience, of my husbands, of our families. It doesn’t matter if my story appears complete on the outside, I don’t think that it will ever fully capture the deep layers of this experience. There are no words and not enough words.


Love is the closest single word that can capture every moment and feeling of this, our story.

My husband and I found each other in 2005. I was nearly 18 and he was 26. It wasn’t an instant connection. We didn’t go in thinking this was it, we’ve found our person, but there was something and it continues to grow. After catching the bouquet and a garter at a wedding after 3 short months, to questioning our stability at 3 years, we stuck. We travelled in Europe, America, Japan and across Eastern Australia together. After 7 years we got engaged. Nearly 2 years later we got married. Nearly 3 years after that we started trying for a family of our own and experienced an early miscarriage, before the incredible birth of our son, Xavier. Life and love have held us together and made us stronger.


I am one of four and my husband is one of three. Two on earth and one in heaven. I always wanted two children. I didn’t care if I got boys, girls, or both. I just wanted the happy healthy surprise at birth. I wanted an age gap so I could give my full attention and energy to each. To capture every early moment. I had seen how quickly the years go having watched cousins and nephews grow up. Having seen friends 3-4 year olds connect more with our baby than they had with younger siblings. Just before mister independent was due to turn 3 we decided to try again. We didn’t know how long it would take, but we were ready. First try and we were pregnant. My husband was stoked that his job was done.


Having walked this journey before, everything felt as it should. My husband had no fear of the newborn phase, and he had seen me deliver before. We never considered we could lose this baby after 12 weeks when there were no signs to suggest otherwise. We knew of miscarriage, we had experience one, along with many others we knew. We had heard of stillbirth and of SIDS, but like most people, we had no idea the numbers or risks. Termination for Medical Reasons (TFMR), a choice parents are given, and mothers solely responsible for signing and physically experiencing, was the ultimate blindside. Our world turned upside down and inside out as layer upon layer this picture was presented to us. Of labor and induction past a certain gestation. Of hand and footprints. Of Heartfelt photography. Of funeral arrangements. Of birth certificates and bereavement payments. Of trying to conceive (TTC) and pregnancy after loss (PAL). The ultimate nightmare was realised, and every sense of naivety stripped away. At 20 weeks we thought we were on the home run. I had a beautiful bump and promising symptoms.

COVID restrictions were lifting and Xavier and his Nanny were finally able to attend an ultrasound with me. The special jelly we had talked about, and the torch that would look inside my tummy and show us the squirming baby growing stronger. I spent most of the ultrasound watching my son sitting on Nanny’s lap watching the screen. Catching glimpses of this future brother or sister pushing against the sonographer, sucking their hand, rubbing their head, and stretching. Towards the end of the ultrasound the sonographer invited me to take a video. As I cleaned the jelly off, she mentioned the baby had enlarged ventricles on both sides of the brain, that a doctor would need to review. That a second opinion was needed. That someone would call.


Ever the optimist, nothing she said set alarm bells off. I assumed they were being safe, that baby's brain was simply developing ahead of schedule. I reassured my mother-in-law. When I mentioned this to my husband and prompted him not to google it, they would tell us what it meant, he searched anyway. What he found was horrible but within a range that suggested a mild diagnosis. I was still hopeful. A call that evening from the doctor was the first taste of real fear, confirming that what my husband had found was correct. I was in tears. The doctor confirmed the Fetal Medical Unit would contact us to arrange a second ultrasound. The words he left me with, “Take care these next days” should have given me some sense of what was ahead.


I went to work the next day, determined to be distracted. To shake my beautiful baby bump Amy Poehler style and share my little video of bub. But there was no hiding the fear was already written on my face. I shared that there was an issue, that we didn’t know what it meant yet. Trying to convince myself this would be ok. Soon after settling at my desk the FMU called to arrange an appointment. That afternoon I left work early, drove to collect my husband, and together we walked the maze of the hospital for the first time. Nothing felt stable. We felt lost. Empty. Completely unprepared. Our appointment was delayed. We didn’t speak. We thumbed through our phones, trying to find a distraction. As soon as we were in, we wanted to be out. Within minutes three words broke the haze.


Ventriculomegaly. Termination. Amniocentesis.


“So, this is serious?”. The tears being held back in the sonographers' eyes were enough to confirm this. She explained that while google will suggest mild to severe, nothing even slightly above normal should be taken lightly, and that there were no guarantees as pregnancy progressed. She told us all the awful things we had read, and aloud it was worse. She talked about MRI’s, of infections, and the benefit of having an amnio for information that might guide future pregnancies. Future pregnancies. This was supposed to be it. She left us for a moment to consider our next steps. To decide if we wanted an amnio, and to arrange someone to pick up our son from childcare.


My husband was quiet and strong. I was choking on tears, trying to find air. I needed every bit of time and information if this was a reality we had to face. We just hugged. The sonographer returned with the specialist to talk through the amnio and risks. They asked about illness during pregnancy, illness in our family, illness at our child’s childcare. They were searching for the potential to have contracted an infection of any kind, of CMV which I somehow avoided as a child. Nothing. It would take at least 2 weeks before our results would be confirmed. They sent us home with the only comfort of “you don’t need to chase us; we will chase you.” Our understanding of what this meant, was vastly different.


That night I did not sleep. The next day I drove to my mums. I drove in tears. When she opened the door, I held her in tears. I could not speak. She asked if there was something wrong with me. I was her first concern. She asked if it was the baby. I could only nod. Her face fought her own emotions holding strength for me. Once I was able to find air to tell her what we were facing, she sat with me and together we wrote questions for the hospital. Information needed to help inform a decision. She suggested we call my aunty who used to work in the ambulance service and had managed a hospital. What my Aunty told us about terminations felt impossible emotionally, but it also filled a gap of knowledge that I didn’t have, in a way I could digest. Something which after experiencing it, I am so incredibly grateful for.

She told me I would have to deliver. That baby may cry, may breathe, may live for a few hours. She told me that I would have the chance to hold, bathe and dress them. That the hospital should provide keepsakes and space to allow us time with our baby. That this time was an important part of the healing process. That however confronting it may seem, the loss of not taking every opportunity can haunt you later through regret, of your only opportunity. I cried that this would kill my husband, he was convinced and comforted believing we would simply have a medical procedure. I questioned how it was possible that families, on top of having to make this decision, would have to face something so incredibly traumatic and watch their child die on top of that.


That night I shared the diagnoses with our family. I asked them to respect our space and simply send love and prayers. That we were facing a decision no parent should ever have to make, but that it was a decision we needed to come to with our specialists. Our specialists who had shown us their true emotions in understanding just how painful this experience and outlook is for families. Again, I couldn’t sleep. I got up early and scrambled up the reserve near our house. I cried, I prayed, I fought for breath. I begged for a direction. For a miscarriage. For a miracle. For some sense that if this was something we had to do, that we could somehow survive it. That it was the right decision. That it was compassionate.


We had been there on Thursday. It was now Saturday when we discovered the FMU didn’t open on weekends, and we had no one. The hospital did not chase us. I finally had a sense of what I needed to know, and I couldn’t get answers. I was in TFMR limbo. A place of life sucking, out of body, mind scrambling, all consuming, overwhelming physical and emotional torture. I felt a baby I so desperately wanted alive and growing in me, and I wanted to disconnect. I felt the avoidance of my husband trying to distance and protect himself. I saw a person in the mirror who I thought was forever unrecognisable. A face scarred by grief. This was not the face of someone who wanted to say goodbye to their baby. To give up hope. This was not a face of someone contemplating the easy decision.


We couldn’t stop though. We had a living child wanting our attention, feeling our fear, and acting out. While he offered reprieve and joy, he was also a barrier to the grief that had already begun. We had the choice to put our baby through a life of suffering. Of being admitted to the NICU, risky shunt operations from birth, infections, seizures, physical disability and a maldeveloped brain. We couldn’t operate in utero. Couldn’t do an MRI until much later. Couldn’t confirm the lifelong impacts until birth. After a desperate search for someone to help, obstetricians, midwives, phone counsellors, and leaving messages to “please give me an appointment”. We were finally, painfully back at the FMU with our list. The answer was simple, until we have answers regarding your amnio the information is the same. If nothing worsens and amnio is clear, the risks are reduced.


It dismissed my questions as being almost irrelevant. It was a relief. Our fears wasted. We simply had to wait. We had hope again. Life resumed. We didn’t have to make any decisions. Two weeks later the amnio was cleared. This was isolated. We went back the FMU for the results feeling relieved. But it was short lived. Another ultrasound. It was worse. If we were chosing to wait, the evidence of hope for a normal life was now gone. If we chose to terminate, our window was for that Sunday. 3 days away. If we didn’t do it then, the outcome would be the same but potentially more traumatic. A decision would need to be made by the next day, before we reached 23 weeks. The specialists tears and confidence that this was the most compassionate choice of two equally difficult outcomes was enough, but I couldn’t release the words. I couldn’t make it final there and then. How were we ever going to make this final?


The next day we returned with our answer. We were going to proceed with the termination. It was booked. The board approved the specialist's advice and our consent while we awaited the unknown in the dedicated family room, where sad news is discussed. She returned with approval, paperwork and a pill. This was no longer a dream. This was now a reality that we couldn’t stop, we just had to move slowly and painfully through each step. My husband watched on in his own silent pain. I choked down the pill that would stop my body producing the progesterone needed and would help prepare my body for birth. I stumbled out of the hospital and out of my body. I cried until I felt physically sick, wishing in every part of my being that this whole experience could be over. For the next two days I went inside myself to my baby. To say goodbye and to summon strength through love.


I chose to deliver this baby with the same love and calm as I had done with our son. To feel every feeling and give birth in the water with music. I stifled my screams, wanting to only hear my breath. 7 hours after induction our baby emerged with three pushes in their sack. When the baby was placed on my chest, I felt this tiny living being. I squeezed my eyes shut. Heard my baby cry. My husband crying. I released everything that had been held together and wailed. I don’t remember if I had tears or if it was just sound. But we were together in the moment. I finally gathered myself, calming enough to hear my baby breathe. The midwives asking if we had a girl or boy. We had a girl! A perfect looking, eyes shut, dark haired little girl.


Willow Charlize was born with compassion. Surrounded by genuine love. She never met her brother, but she heard his voice. The rest of the family never got to meet her, but their love for her lives on with us.


I am forever grateful for Kayleigh McGlynn who provided photography through Heartfelt. Clothes provided through Treasured Babies. My pieces are slowly being rearranged and put back together with the incredible support of Red Nose. I have accepted grief is not linear, there are no stages to be completed, no backsteps, just a choice to move forward. To accept that grief is love and pain enter-twining, tangling, dancing, separating and strengthening in every part of its being. Two separate worlds colliding. Grief is love. Endurance. The only tangible way I can make peace with this is to rebuild grief as an opportunity to make a difference sharing my story. Making clothes for tiny babies. Fundraising and raising awareness. Showing others, they are not alone. That they are seen. That love is stronger than any pain when you give it space, honour vulnerability, and be truthful in your experience to empower others.


You can follow our story on Instagram @with_love_willow



Jules Mallia

Australia

Submitted 06/06/2021


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