About Us

We’re Ben and Annie Gould, we have two children Elsie and Jacob. Elsie is our first born, born 6th August 2020 at 06.15am and wow! What a tiny little gorgeous thing she was! We didn’t find out the sex of Elsie, and the suspense was torture - were both quite impatient, so 9 months of guessing was long to say the least. We have two nephews, so when Elsie was born, we were absolutely ecstatic - we had had the first little girl and first granddaughter on both sides of the family. It didn’t get much better than that and what an absolute whirlwind of a year we had with her. She was such a character; it was her way or no way.. literally!! She was the sassiest little thing, with an attitude just like mine and a trademark pout to go with it. She melted everyone’s heart and is pure joy to everyone’s lives! I found out I was pregnant with our son Jacob in July 2021, life was pretty damn good, we had everything and so much more, it was perfect!

 

August 14th 2021, was the day our lives changed forever. Ben was giving Elsie breakfast in the kitchen and she started having a fit, he shouted for me to help… I ran so fast hearing the panic in his voice and found Elsie seizing on the floor. I told Ben to call 999 while trying to use my degree in nursing to treat my little girl which is pretty much impossible, it all goes out the window when it’s your child. She came round pretty quick on this occasion and started crying. I picked her up but still insisted the paramedics came... they took us to Poole hospital where she was checked over and we were sent on our way, discharging Elsie with BRUE (brief resolved unexplained episode). The seizures didn’t stop, and the hospital admissions became more frequent. Fast forward a month and Elsie was diagnosed with epilepsy - we finally had answers and were following a plan with the medical team to help support Elsie with her new diagnosis. On September 17th 2021 we were back in hospital with Elsie’s seizure’s, this time they were not resolving on their own and after a very unsettled night, I woke to my baby girl unresponsive and struggling to breathe. She was intubated and taken for a CT scan where they found a non-cancerous tumour (choroid plexus papilloma) on her brain which was causing the seizures. The tumour had caused a cyst full of fluid, which was putting pressure on the rest of her brain. She was emergency transferred to Southampton general hospital for brain surgery.

 

Ben and I weren't allowed to travel in the ambulance with Elsie, so we drove up separately. When we got to Southampton hospital, they talked us through what was happening with our daughter (after nearly walking into the theatre room itself). They showed us to a room with a double bed and a bathroom that we could use while we were there. They called us with updates throughout to let us know how she was getting on. It was the longest 5 hours of our lives!!

 

The surgery was successful, they managed to drain the fluid to relieve the pressure and take biopsies from the tumour, Elsie was transferred to the PICU (paediatric intensive care unit) and we were allowed in to see her.

 

We remember that night so clearly, the nurse told us to go get some sleep because we would need to be on best form for when they reduced Elsie’s sedation and she wakes… begrudgingly we listened, but only after she told me; from a nurse to a nurse and mum to a mum, she would look after Elsie like her own! I remember lying there, in bens arms and him saying to me - no matter what, we will stick together through anything and everything. And my gosh hasn’t he meant it - what a husband/daddy, he is our absolute rock! 

 

The days went on, and the scans were proving we were living a nightmare. Elsie wasn’t waking even after they had reduced her sedation medication. She would go for MRI scans and the results would come back with no change. Ben and I didn’t really need to talk about what was going to happen, it was almost like we knew, we would just give each other a certain look. A look of absolute heart ache and terrified of what the next few days would bring.

 

When it came to the worst day of our lives - we were allowed to take Elsie outside to the little courtyard.. we picked fresh flowers and laid them on her pillow.. we talked to her about the clouds and the blue sky and the sun, which was shining so bright that day. 

 

On 22nd September 2021 our baby girl's life support was turned off, I held her in my arms and Ben held us both… there are just no words. 

 

We left the hospital the next day, not a clue how we were going to continue with life, not a clue how we were going to tell people, not a clue about the future! The only thing we knew was I had this tiny little baby in my belly, Elsie’s brother, and we had to continue for them both… but the days were very dark and very hard!

 

We are very fortunate that I work for the NHS, that Ben is good with saving and for our families and friends, otherwise those first few months after losing Elsie would have been made a lot harder with financial worries. There is limited support out there for parents in situations like ours, so we want to be that support. Families shouldn’t ever have to go through what we have but devastatingly it happens more often than we think.