Our Warrior of the Week this week is the very beautiful Ava, I don’t think anyone could read her story and not be touched by her courage, bravery and tenacity. Here Grandmother Deanna tells her story.
My granddaughter Ava was born on March 19th 2015 full term and absolutely perfect. We had booked a family holiday in Devon in the June which included my parents and brother, husband, son and daughter, son in law and granddaughters Tilly who was 2 and Ava was 13 weeks old.
We had a fantastic holiday even the weather was good and although we didn’t want to leave Alix and James decided to return home on the Friday night as they said the children would sleep through the journey and the roads would be quieter. So we said our goodbyes and off they went.
Three hours later I was woken up to a phone call from James shouting there had been an accident on the M5 motorway and Alix and Ava had been taken to hospital in one ambulance and he was in another ambulance with Tilly. The next 3 hours were a total blur I scrambled myself together with my son and husband and we took off to try and catch up with them.
We arrived at Worcester hospital where we were greeted with the news that Alix was in resus and Ava had been put to sleep and taken to BCH but they feared that she had sustained serious head injuries, Alix was also in a critical condition with a broken neck, back and both sides of her pelvis plus internal bleeding and bruising.
I left Paul and Sam with Alix and made my way to BCH where both children were and on arrival I was greeted yet again by a consultant who reassured me that Tilly was fine apart from some bruising from her car seat but that Ava had been critically injured and I needed to prepare the family that Ava was not likely to survive her shift.
James was in another Birmingham hospital getting treatment for his injuries so it was up to me to organise getting Tilly home to Stoke and getting back to Alix who was in Worcester.
Fast forward the next few days Alix had emergency surgery on her neck and Ava was surviving in PICU but having massive seizures which they couldn’t control . Five days after the accident we managed to get Alix to Birmingham to see Ava but on arrival a Dr asked to speak with us they had done a MRI on Ava’s brain and it showed a massive grade 4 bleed with very little chance that she was going to recover. We then had to put her on the end of life pathway but they would try one last treatment first. It worked!
Ava stopped having seizures and started to make a miraculous recovery within a week she was out of PICU and on a ward where over the next 10 weeks she had a shunt placed in her brain to help drain off the blood and we discovered that her injuries had caused her to be blind but at the time that was a small price to pay. We left hospital and began to care for Ava at home but by the end of September we noticed she was making these funny movements almost like she was trying to stop herself from falling – we were told it was a normal reflex in babies and nothing to worry about but they started coming more frequently and Ava began to get quieter and she stopped smiling when spoken to we had video’d her and took her to A&E where after much persuasion they admitted her and after tons of different tests an EEG showed hyppsarrythmias which confirmed the diagnosis of IS.
Her treatment was injections of ACTH and prednisolone along with an array of other meds to control the side effects of the steroids plus we lived in isolation for fear of bringing any infection home to her.
We were really lucky that the treatment worked from the very first day of her having it and today she is 2 years seizure free although still on Keppra. She has had delayed development which was to be expected as she had missed a good 6 months being in hospital and then having the spasms but she regained her sight and is catching up fast and is a typical 2 year toddler with a temper to match! We have had a traumatic couple of years but against all the odds she has survived and continues to thrive and make us laugh every day we are truly blessed .