Jayne’s Story

In brief my story is that I was already disabled when I became pregnant. I used to be an actor and in 2008 I had an accident on stage where the set fell on my head. Following this I developed a neurological disability. It’s mainly pain in my right frontal lobe. Diagnosis is chronic migraine, cluster headaches and chronic neurological pain.

Because of this we waited longer then we wanted to try for a baby because we wanted to find a cure for my neurological problems. It became apparent that this wasn’t forthcoming after a stay at the hospital for neurology and neurosurgery at Queens Square, where I had an intravenous treatment that only worsened my condition. So we decided that I would come off all treatments and we would try for a baby. It had been my dream to be a mum.

I got pregnant and was due to give birth in May 2015. I was immediately put in the high risk pregnancy group but there was no continuity of care and the hospital did not seem to want to understand my neurological problems. I was mainly worried because when the neuro pain is really bad I cannot communicate well verbally. After hearing about advocate midwives we got in touch with one at the hospital. She attended meetings with the head of high risk pregnancies and eventually a plan was put in place. The plan was induction and early epidural if my multi cranial nerve block injections had an positive effect and Caesarean section if not.

When we arrived at the hospital nothing went to plan. I signed the consent forms for the c-section straight away and was told that we could convert at any time.

My worst fears came true when my neurological condition became increasingly bad during labour. I couldn’t speak. They decided to take me into surgery and I thought they were going to do a c section. Instead they prepped me and were called away to another emergency until I became an emergency as my son’s heart rate slowed and emergency cords were pulled. It turns out they had not prepped me for a c section but instead to use forceps. Which they used 6 times.

At this point I didn’t know what was happening but I prayed over and over in my head if one of us had to die please let it be me and not my baby.

When JoJo my son arrived he did a quick cry as if to say I’m alright Mum. I didn’t get to see him and he and my husband were moved out of the room as I was now struggling. I nearly died. All of these moments play out in a movie in my mind. It’s unlike any other memory. I would later learn this is a symptom of PTSD from which I suffer.

I was in surgery for hours after the birth. All I can remember is the doctor saying, ‘Oh shit, it’s a fourth degree tear. ‘

Then the best moment came and I got to meet my son who had been having skin time with his Dad. He had some cuts from the forceps which I was concerned about.

I didn’t realise that my life had changed forever (not just becoming a mum) but from the birth injuries that would stay with me forever.

None of the midwives back on the ward seemed to know how to deal with a fourth degree tear. I had a blood transfusion and was in for a few days. I was told I had a fourth degree tear in the middle of that first night but I really didn’t understand. Everyone has tears don’t they. I just must have to get on with it.

So although I wasn’t able to move well, had no bowel function and felt very strange I was sent home after a week.

So glad to be home I wasn’t prepared for my repair to break down entirely that evening and rushing back to the hospital. Where I had a weekend of hell and just missed the surgery list on Monday. I begged that they do the surgery on the Tuesday. Thank god they did.

So after the first two weeks of JoJo’s life (our beautiful boy) being in hospital we were home. And my husband and I had to deal with things that we had never dreamt of. My husband basically had to manage my wound for me. It was a horrific time and also the best time because of JoJo.

Unfortunately, things got worse again with my injuries and I have had 10 operations in the last 6 years including a colostomy which I had for a year and a half and a colostomy reversal.

Not enough is known about fourth-degree tears and the impact they can have on people’s lives.

Some words from medical professionals from that time that have stuck with me have been;

“Just be happy you have a healthy baby.”

“You’ll be walking in the park with the other mum’s before you know it. “

“Because you were disabled before your pregnancy then your life is worth less than if this had happened to an able-bodied person. “