As I begin to type our story, Zara’s story; there is still an overwhelming fear of judgement. And yet we know we made the right decision for us, for our family but most importantly for Zara. We never wanted her to feel pain, to suffer or live a limited life. I want to share Zara’s story because although I have found the baby-loss community hugely supportive, TFMR is still a taboo within a taboo.
We decided to try for our third baby in January 2020. We are already blessed with a daughter and a son. I got pregnant in the July and we were thrilled.
Our 34 week growth scan – a date that feels permanently etched in my brain. The sonographer stated that the babies’ ventricles were measuring 16mm and that the consultant would need to see us. She explained by this stage of gestation a babies ventricles would be expected to measure 8mm. There was a lot of grey matter surrounding the brain which could be fluid or blood. The term ‘ventriculomegaly’ was first mentioned.
We were taken to the quiet room – I now know nothing good comes of the quiet room! The consultant outlined that we would be referred to fetal health the next day. Both my husband and I had blood taken; mine for infection markers and my husband’s for human platelet antigen (HPA) genotyping.
Between appointments, we exhausted every corner of the internet. Nobody investigates better than a worried mother – not even the FBI. I recently read this and it couldn’t be truer!
At fetal health we met the most amazing doctor who stayed with us throughout our care. Firstly, she believed that the darker areas surrounding the brain were signs of a significant bleed but the only way to get a definitive answer was to have a MRI scan. She also stated that she wasn’t happy with the blood flow through the heart and specialists would scan us. Zara was only measuring 4lb 13oz by this point which is extremely small for my history. Our second child was over 8lb when we went for our final scan at 36 weeks. This plays on my mind a lot now.
We had our emergency MRI scan a few days later and the results analysed within 72 hours. The next morning we were offered an appointment at a children’s hospital. The fetal heart specialists were incredible and knowing we would get instant results from this scan felt like light relief. They discovered that Zara had multiple mid muscular VSD’s. This could initially be treated with diuretic medication or surgery within 6 months. I remember not being phased by this news. They could offer us a plan and outlined that children lead normal lives after surgery. However, it will forever stick in my mind when the consultant said to us that she knew the brain abnormalities were the main concern.
As we left London my phone started to ring and it was our doctor. It hadn’t even been 24 hours since our MRI scan. I just knew it wasn’t going to be good news. She had received the report and the MRI analysis and said we should pull over.
“I’m so sorry it’s not good news”.
Zara had bilateral severe ventriculomegaly secondary to severe reduction in white matter volume and widespread polymicrogyria. I needed to know what this meant for Zara’s quality of life. To briefly summarise, it would have meant she would have had a type of epilepsy that could not be controlled with medication, they would only be able to sedate her and she would begin to seizure once the cord was cut, a high probability she would be blind, never feed, and be severely physically and mentally disabled. The trouble with a diagnosis in pregnancy is that nobody can tell you for definite what the day-to-day is going to look like. This is something I still wholeheartedly struggle with. We couldn’t stand the thought of her being in pain, suffering with no solutions or chance of making her brain better. Who would choose that life for their child?
A TFMR was offered, advised and explained. I had no idea this could ever happen in the third trimester. We had to believe we were doing the right thing for our unborn child with the help of many experienced medical professionals.
Zara’s heart stopped beating on Monday the 29th of March 2021. I don’t really have any words for that day or the procedure. Something nobody should ever have to go through. We didn’t want to make the choice which seemed like no choice at all.
We spent the next day ensuring we had everything we wanted for the induction whilst trying to parent our 2 and 5-year-old. Knowing our baby was now a girl meant we could buy her that “little sister” baby grow. Carrying your baby when you know they have passed away is beyond comprehension but I didn’t want to let her go. In a very bizarre way I am glad we had that time; it allowed us to prepare ourselves for the short period we would have with Zara.
On Wednesday the 31st of March 2021 we arrived at our local hospital. Having read so many other loss stories we were lucky to have a suite separate to the labour ward so we didn’t hear other labouring mothers or crying new-borns. A traumatic reminder of the deafening silence within your room.
Zara’s birth was lovely. A strange adjective to use you may think. At 15:11 a beautiful 5lb 13oz baby girl was born. How can such a tragedy be so serene? I remember the weight of her on my chest and being so overjoyed that she felt warm. We were so in love with her and I believe for a split second we had forgotten that she hadn’t cried or made a sound. She was the perfect mix of our son and daughter and looked at peace. How could she have so many problems yet look like a perfectly formed beautiful baby?!
We spent hours just gazing at her. The midwives that cared for us and Zara during that time really are angels on earth. They spoke to Zara as if she were alive, treated her with respect and helped us to create as many memories with her as possible. We had one night with our daughter. Just one night.
I knew leaving Zara would be the worst thing I would ever have to do. How could I leave my child? How could I walk out those hospital doors empty handed? Our bereavement midwife took Zara just after midday. I’ll never forget the noise that came out of me, a cry like no other, and a scream from the very pit of my being before passing out with exhaustion.
The next few days and weeks were about surviving. We wanted to protect our other children as much as we could as well as being as honest as we could. This would often mean our evenings were spent falling apart. Planning Zara’s funeral gave me a distraction, but my goodness no parent should ever have to do that. It is not the natural order of life. All I wanted to do was lift the lid on her casket, grab her and take my baby home.
Our quest for answers only came to a close in January this year. After 10 long months of trio whole genome sequencing, the results came back with “no genetic diagnosis identified”. This does not mean that Zara didn’t have an underlying genetic diagnosis, but with the current knowledge we have in genetics they have not been able to identify one. I wanted clarity. I think it is human nature to want concrete facts. Therefore, we are given a 1 in 20 chance of this reoccurring because it already has.
Life without Zara will never be the same again. Relationships have diminished, new ones have blossomed with some of the most amazing women and a part of my heart lives in the stars with her, our dearly loved and wanted daughter. If anyone newly bereaved is reading this, please try and reach out to others. It is a lifeline having other parents to talk to who know exactly how you feel. In the run up to Zara’s first birthday we hosted “The Zara Rosie Ball” which allowed us to raise awareness and honour our little girl’s memory. We raised over £6000 which was split between ‘Saying Goodbye’ and ‘ARC’. It saved my soul during the first year of grief, a way of mothering Zara without her in my arms.
I wouldn’t have felt as lonely if I had come across a third trimester TFMR story which is why I decided to share ours. I still do feel very alone but I have found peace in the decision we made, which felt like no decision at all. Zara never knew pain, only love and the warmth of my body. There isn’t a day that goes by where I do not think of her.
My only wish is that we will be together again, hold her in my arms once more and tell her how I have missed her for an entire lifetime. My Zara Rosie.