Doctors had to drill into my baby girl’s head
Becky Meddick, 27, from Wiltshire, fought for her baby’s life…
Staring at the inside of the hospital walls, I wasn’t expecting this was where I’d be on Christmas day, 2019. I closed my eyes and tried to calm myself down and ignore how incredibly ill I felt.
I’d only just reached 27-weeks of my pregnancy and my partner, Jack, 24, wasn’t even allowed into the hospital to hold my hand.
After being told my unborn baby, Aida, was showing signs of reduced movement and heart rate, I was terrified of what was going to happen next.
It started with an incredibly bad flu which gave me sickness and a temperature.
But it quickly developed into sepsis in my kidneys.
‘Your right kidney is enlarged, and we need to drain it with a nephrostomy bag,’ the doctor explained.
‘As long as my baby is fine,’ I said back.
After two horrible weeks of recovery, I was sent home with the bag still attached and told my baby would be fine.
Unfortunately, this was only the beginning of far worse to come.
On 7 March 2020, Jack and I welcomed Aida into our lives after I had a C-section at 1am in Bath
Royal United Hospital.
She weighed 7lb 4oz. ‘Why is she so swollen, I can’t see her right eye!’ I panicked.
‘She’s fine, it’s just because she was breech for so long,’ the doctor reassured us. ‘We’ll see you for the six-week check.’
We brought her home and introduced her to her big brother, Elijah, five. He instantly adored her. As the weeks passed the swelling hardly changed.
When Aida was due her sixweek check, no doctor could come and see her as the pandemic had hit, hard.
‘The whole of the right side of her head is bulging,’ I said to Jack. ‘We need to get her looked at.’
After eight weeks we took her to the local hospital.
‘We’re quiet today so we can send her for a scan on her head,’ the doctor said. After a week, the doctor rang with the results.
‘Aida has unicoronal craniosynostosis,’ he said.
I’d come across the condition when previously researching her symptoms, so I wasn’t surprised.
But hearing the words still shook me.
It’s a condition affecting the growth of the skull which can cause the forehead and eye socket on one side to be flatter and the other more protruding.
There can be lots of terrifying severe consequences of being born with the condition, including pressure build up in the head.
I rang Jack to tell him our suspicions were true.
We then had to wait for a referral to the John Radcliffe Hospital in Oxford.
Jack and I moved in with his mum, Lynn, to help us during uncertain times.
On 24 June I took the kids out to the local park while Jack was at work.
We had a picnic and huge, tasty ice creams while enjoying the sunshine.
The following day started like any other.
After having a fun bath time with Aida I picked her up and took her into the kitchen to dry and dress her on the breakfast
bar, like usual.
Laying her on her towel, I looked down at her.
Suddenly, my whole body jolted and I let out a shriek.
‘Lynn, Aida’s not breathing!’ I screamed.
I held Aida’s limp, floppy body in my trembling hands.
‘Call an ambulance,’ I shouted to her.
Lynn dialled 999 and we were straight through to a medic.
A few seconds later I was performing chest compressions on my tiny, lifeless Aida. Nothing felt real.
The tiny baby I was giving CPR to didn’t feel like my baby.
It just couldn’t be happening to our Aida.
Stepping back from the breakfast bar, the paramedics ran in.
Aida looked so tiny lying there surrounded by them.
Jack burst through the front door and pushed his way to try to get to Aida.
The look of fear on his face is something that will stay with me for the rest of my life.
‘Please step back,’ the medics urged us.
After being blue lighted to Bath RUH Aida was finally starting to come around.
Because of Covid, Jack wasn’t allowed in.
Oh God, I thought. What if they say she’s fine and send us home now she’s awake again? But, she soon started having another seizure.
A nurse ran in and pressed the emergency buzzer.
‘I think you should ring Jack,’ the nurse explained. ‘We’ve got to do what we’ve got to, and once we’ve done we’ll tell you what and why.’
A doctor came into the room with a huge drill that looked like it was for construction work.
‘You should go and wait in the family room,’ the doctor said
Stunned, I left and rang my mum, Ann.
‘I think she’s going to die, Mum, I think she’s going to die,’ I sobbed down the phone.
I couldn’t stop crying. Now he was allowed to, Jack could finally join me in the family room.
After 30 minutes we could see her and were told they had to drill into her calves to give her medicine as quickly as possible.
She was covered from head to toe in awful bruises and bandages with huge tubes coming out of her legs.
It was a difficult sight.
After being told there was a possibility of a bleed on the brain, meningitis or epilepsy she was sent for loads of tests.
Six traumatic days later she was stabilised and could come back home.
Returning to the hospital every eight weeks, we awaited a diagnosis.
On 9 December we were told that Aida has a genetic condition, linked to her unicoronal craniosynostosis, called Muenke syndrome.
The syndrome will cause her to have learning difficulties alongside her short spine and a cleft palate.
Epilepsy can be a rare symptom of it, too – which is what caused her seizures.
We’re now waiting for an appointment for her to have surgery on her skull.
They’ll completely reconstruct her face from her nose to forehead.
I’m dreading the day.
I’m also terrified that she’ll come out looking like a different baby.
If it wasn’t for the possibility of her skull causing a build-up of pressure which could cause her to go blind, or worse, then we’d refuse the surgery.
Our differences are what make us beautiful in ways which no one else is.
She needs constant support to keep her head upright.
Otherwise, her spine would bend which would cause serious problems.
In February Jack and I both got tested for Muenke syndrome because it can often be hereditary.
We found out that Jack also has the same syndrome, which explains a lot of issues he has struggled with his entire life.
He is 50 per cent deaf which is a symptom of the condition.
Aida has been born with the most severe symptoms.
Every day we’re learning, adapting and coping together.
We made Aida an Instagram page which has really helped us through the past year.
Her profile celebrates her differences and encourages other families to talk about their experiences with Muenke syndrome or craniosynostosis.
Hundreds of people from all around the world have reached out to tell us their stories and to give us kind words and support through the hardest times.
Jack and I want to spread awareness of Muenke syndrome or unicoronal craniosynostosis.
We’ve also set up a fundraiser page to raise money for Headlines charity, which helps those with a family member with craniosynostosis. They’ve been incredible. I’ve rung their 24-hour line so many times having a complete meltdown.
Jack and I have decided to abseil down the London orbital, 115 metres, to raise them some cash.
I’m terrified! We’ve raised a total of £700 so far.
It’s been an incredibly tough year for us all.
But we’re ready for whatever the future holds for us.
●fo●●ow Aida on Instagram @Aida.willow or donate to justgiving.com/fundraiser/ becky and jack abs ail
She soon started having another seizure