Josephine was my first baby, born in May 1993. My pregnancy was normal and healthy. Everything went wrong when, at term, I was admitted to hospital to be induced. There was no space on the labour ward, so I was put on the postnatal ward. To anyone in the maternity profession, that would be a red flag - you don’t induce someone there. Added to this, the midwives were very, very busy, unsympathetic and uncommunicative. The doctor who read the trace of Josephine’s heart was incompetent. And the obstetrician who was supposed to be looking after me failed to come back and check. Then, Josephine aspirated meconium and was completely flat at birth. She had to be resuscitated. The result was that she had catastrophic brain damage.
Devastating testimony: Sheila Brill recently gave evidence to an all-party parliamentary group after her experience with daughter Josephine[Missing Credit]
She spent a month in hospital, first in intensive care and then in NICU. She had severe cerebral palsy, leaving her unable to feed and with many uncontrolled seizures, which they were always battling to control with different drug regimes. She was like a little frog with no tone at all. We had to learn how to tube feed her, to look after her with all the wires and tubes. As parents, it was totally terrifying. I was a competent, 36-year-old woman, but I felt completely disabled by the situation.
I didn’t know it then, but I had PTSD. I was permanently on red alert, as Josephine lurched from crisis to crisis, and I think the only time I didn’t have adrenaline rushes was when I was asleep. It was exhausting. I was constantly fearful, waiting and watching the whites of the doctors’ eyes - a state of hyper-vigilance, always anticipating disaster. My heart pounded, my chest was tight and my throat sore. The night before she came home, I had to sleep in the room with her, alone, with a red button that I was told to press in an emergency. But what constituted an emergency? I lay awake all night, repeatedly putting my finger under her nose to see if she was still breathing, still alive.
And then she came home and we had to learn how to care for a profoundly disabled child, something we had not planned for or trained for. Josephine was a very pretty child, with thick dark curls, very long eyelashes and dark blue eyes. She had severe spasticity, with limited movement, and was cortically blind, so she didn’t ever make eye contact. But she had excellent hearing and recognised voices. If she liked you, she’d make an almighty effort to swing round towards you. She also loved a good argument. If there was a row, she’d wait for the silence and then let out a great big roar, getting her two-penny-worth in.
Even though she didn’t smile much, you could see contentment in her face. She loved being in a light-dappled forest, she loved having a bath and she loved the budgies in the garden centre. Despite being non-verbal, she was clearly a very sociable person.
With the young Josephine[Missing Credit]
In 2000, six and a half years after Josephine was born - by which time we also had a son, Asher - the hospital settled out of court. The compensation meant that we are able to pay for the things Josephine needed to make her life better.
But the feelings I’d had while Josephine was in hospital - the hyper-vigilance - continued for many years. It wasn’t just when I was with Josephine or talking about her, the slightest thing would trigger me. I could be in a business meeting and I would suddenly go into an internal panic. I was also pretty volatile, prone to outbursts of anger. It was only when a friend, a medic, spotted the irrational anger 20 years after Josephine’s birth and said, I think you have a problem, that I realised my reactions weren’t normal, but were symptoms of PTSD.
I’d had counselling and therapy after Josephine’s birth. But talking about trauma only helps you understand it; it doesn’t fix the source or make it go away. It's like treating a headache with paracetamol, but not knowing the cause. Once my PTSD was diagnosed, I opted to have EMDR (eye movement desensitisation and reprocessing) treatment, which was originally used with war veterans and stops difficult memories causing so much distress by helping the brain to reprocess them. It works by getting you to recall traumatic memories while you receive bilateral stimulation - in my case buzzers attached to my body - which makes the memories lose their intensity. It sounds like quackery but, oh my God, it works. It's extraordinary.
I knew I was cured when, after finishing the treatment, I was invited to the special care home where Josephine by then lived to see a video of things that she’d done. As I sat and watched the video, I was moved to tears, but none of the other symptoms rushed in. I had appropriate emotions instead of the heart pounding, tight chest and sore throat. It was incredible.
Although I was brought up in an Orthodox shul, I was never religious. My husband Peter and I have for years been very involved in our local Liberal synagogue in Bristol. They are a wonderful community and were always accepting of Josephine in her own right. The synagogue is a fully-accessible building and whenever Josephine came to shul, she roared and snorted during prayers, but we never felt embarrassed.
When Josephine was 12, the Rabbi’s wife suggested that we celebrate a bat mitzvah for her. She added that it would be good for the community. It was an incredible event, such a rite of passage, and so moving. At the service, Asher paraded the scroll for her, as she couldn’t do it, Peter read her portion and I did the haftorah. About a hundred people were crammed into the synagogue that day. Afterwards, we had a party in the garden, with a marquee. We turned our garage into a sensory zone with bean bags, and Josephine greeted all the guests from her bean bag. There were people playing guitars and singing, a harpist a flautist, plus a touch therapist. Several people spoke about Josephine; I had to preview their speeches so I didn’t descend into tears. The love in that space that day was epic.
Josephine had so many health issues and procedures throughout her life and, by her early 20s, her health was going rapidly downhill. By the end of 2016, the feeding tube that had been inserted into her stomach was failing. She was bloated, unhappy and more or less unresponsive. With her organs shutting down, there was no longer anything the doctors could do, and she was moved to palliative care. In January 2017, at the age of 23, she died. Our rabbi was wonderfully supportive, and there were about 200 people at her funeral to remember her.
Since then, I have been working with nurses at the University of the West of England, using my experience with Josephine to ensure better practice. I will be helping to interview candidates for the midwifery degree course. What I want is to see safety in childbirth - for mothers, babies and staff - so there is an environment which is well staffed by honest, transparent, committed professionals, supported by good management. Thirty years after Josephine’s birth, women are still going through terrible birth experiences, and they needn’t be happening. I want nobody else to experience what I went through.”
Can I speak to Josephine please? by Sheila Brill, is published by Resilient Books
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With new-born Josephine[Missing Credit]