My 9 month nightmare

“My 9 month nightmare” – Miss W writes about her experience of NAI and EDS

Miss W and her family went through very distressing care proceedings having been accused of shaking their son. Miss W has kindly written this post to give other parents some insight into the process and proving their innocence. We were able to demonstrate, after a lengthy fact finding hearing, that the cause of the child’s injuries was medical and accidental; the parents were exonerated and their son returned to their care:

A year ago today I was sat in a police cell. I’m sure many of you reading this will find this start familiar. I wanted to write this to offer support to families accused of non accidental injury and to make people aware that nightmares like this happen often. My 9 months of hell started like any other day, nothing unusual.

It got to our son’s bedtime when my other half took our son upstairs for his bath. I was downstairs when I heard a massive bang. Our son had rolled off the bed when my other half’s back was turned. He was 9 months old at the time. I went upstairs to find him crying and went over to check him. As soon as I looked at him his eyes rolled back and he looked as if he was fitting. I ran to the phone dialled 999. I was in a panic but knew I had to stay calm to relay information and instructions. I remember looking at him thinking that’s it he is going to die on our bedroom floor. I remember as soon as the paramedic car arrived at our house I shut down. I sat in the front room and just waited for someone to come and tell me he had died. My emotionless response was used against me later (if you have no emotion you must have harmed the baby). My dad died when I was 20 and it hit me hard, I never dealt with it properly and found shutting down helped dealing with it. Since then I have used this coping mechanism to cope with traumatic events and losing loved ones. I thought I’d be different with my son but history was repeating itself. I feel guilty to this day that I shut down.

 Our son was taken to hospital where they found an old bleed and a new bleed on his brain. Later they found retinal hemorrhages. He was being transported to another hospital and we weren’t allowed to ride in the ambulance. We went home, as it was on the way to the other hospital, to get some things so we could stay at the hospital and get my father in law to look after our dogs. Parked outside was a police car. We parked up and approached the house; we found out that our house was a crime scene. This was the point that I realised they think we have harmed our son.

Another police car arrived and asked us to come down to the station. Our son was in theatre, we were helpless and couldn’t do anything and I knew this was the start of proving our innocence. I said to my fella that we haven’t done anything wrong so let’s go. I thought if were willing to go then maybe they could see this was just an accident. We went and told them our account. We then had to be escorted back to our house and watched while we got our things. We had to hand over a set of keys so they could come and search the house. When we finally arrived at the hospital our son was still in theatre. We were escorted to this room where we had to wait for him to come out. When he did come out of theatre a load of doctors came in to tell us of the progress. We told them what happened and they look at us as if to say ‘your not telling the truth’. 

It’s only when you go through the court process you find out that hospitals don’t do a full range of tests. It seems as soon as a child presents with symptoms of shaken baby syndrome they shut off, treat the child and pass the buck to social services. I can understand this, I wouldn’t want the responsibility of deciding whether this was child abuse or not. The next day, we were told we were not allowed to see our son until a social worker had spoken to us. I couldn’t believe it. My son could die at any minute and I’m not allowed to see him. I remember breaking down, I just wanted my boy. We were just left for hours not knowing what was happening when finally we met the social worker. Now we have had several social workers throughout these proceedings, most were professional and very nice but this one from the beginning treated us like there was no doubt we were guilty. She treated us like child abusers. We were only allowed to spend two hours a day with our son and this had to be supervised. This meant he was alone in hospital for 22 hours a day; we weren’t allowed to be there for him.

Three days after we had a phone call from a police officer asking us to come down to the station for a chat. The phone call came at 5.30pm when most solicitors had gone home. I researched and knew we were going to be arrested the next day. When we arrived at the station we were arrested and put into seperate police cells. I remember not being scared as I naively thought as we haven’t done anything we would just tell the truth and all this would be over. I got home that night and began researching differential diagnosises for shaken baby syndrome. There seemed to be so many so I couldn’t understand why the doctors weren’t looking at these.

 We are a normal, decent family. Me and my fella have been together for 12 years and this was a planned baby. We didn’t abuse drugs or alcohol. Why were we being labelled child abusers before looking into anything? My son had no bruises or broken bones; how can a child be shaken without leaving a mark? My mum was later arrested as she had had contact with our son. She was so scared they had to get a doctor out to her. It has totally traumatised her. I look at other grandmas with their grandchildren and think ‘tomorrow you could be accused of harming them’. It can happen that easily.

When our son was ready to be discharged from hospital, we were told we would have to go to court as social services wanted to get an interim care order made. I researched and knew we had to get solicitors who knew about non accidental injury. This is when I found Rachel Carter.

The court day arrived and I felt sick; we had never been to court before. Our son was placed into foster care the next day; our house felt empty. From then on we had contact in a contact centre. Our social worker treated us like dirt but the contact supervisors were human and treated us like human beings. I remember at the first contact feeling the relief that he was out of hospital and on the mend. He made a good recovery, he had to make up his strength again but was doing well.

Numerous medical experts were instructed to write reports about our son’s injuries. This is difficult as you have to have permission from the court and can’t simply choose who you want. We had to prove why we needed these experts. Luckily for us the judge allowed them. We had a haematologist, ophthalmologist, neurosurgeon and a paediatrician. Later, an Ehlers Danlos Syndrome (EDS) expert was instructed.

The haematologist found no bleeding disorder, so why did my son bleed? I couldn’t understand it, I knew there was something underlying. I understand children don’t get subdural bleeding from short falls else we would be extinct by now. The neurosurgeon talked about a birth bleed turning into a chronic haemorrhage which re-bled when he fell off the bed. Six weeks after my son was born the health visitor during a routine check found our son’s head circumference had increased rapidly. We now know this is a symptom of a birth bleed along with the projectile vomiting he was experiencing.

Very early on my legal team had asked me whether there was any hypermobility in my family. I researched hypermobility and asked family members. It became clear that my mother in law and my partner could both do various bendy things with parts of their body. Ehlers Danlos Syndrome is a connective tissue disorder that often goes undiagnosed. Many people, like my in laws, have just put up with the symptoms. We waited while my other half got tested which was painstakingly slow. My son was having physio due to the brain injury and it was at physio that the word hypermobile cropped up again. During contact also we noted our son having unexplained bruising, purple marking some of which appeared during contact. With a contact supervisor as back up that nothing had caused these marks we had more proof to show something wasn’t right with our son. My team successfully applied for a geneticist to deal with the Ehlers Danlos Syndrome in time for the fact finding hearing.  

The fact finding hearing arrived and we spent many days in court listening to the evidence. The paramedics had criticised my lack of emotion at the scene. The medical experts then started their evidence and things perked up; they were all uncomfortable with a diagnosis of NAI and were leaning towards accidental injury. 

It then came to our time in the stand. It’s scary and horrible but you can be strong. Be yourself and be honest is all I can advise. I have a history of mental health issues. I like to say now I’ve recovered; I’m off medication and been well for a number of years and have a very good mental health team looking after me. However, it seemed fitting for the local authority to drag this up, make me out to be monster. They can try to rely on anything in your past, you’ve just got to be open and honest. I was and thankfully the judge believed me. Our account of that night fitted with the medical evidence; our account was consistent because it was the truth.

We finally got our answers about how our son ended up in this condition – a birth bleed turning into a chronic bleed which rebled when he fell off the bed. Then factor in that he probably has Ehlers Danlos Syndrome which may have made him more susceptible to a bleed (EDS causes easy bruising and bleeding). The judge believed our account and cleared us of any wrong doing. 

So life after care proceedings? My son was coming home. I thought I would be cheering, however, you’re just left in shock and I spent the whole weekend thinking ‘is that it?’ You can’t believe its over. So the day arrives. You’re nervous as you don’t know what the future holds. Will he settle? Will he like being home? The first night was horrible; our son picked up on our anxiety and wouldn’t stop crying when we tried to put him to bed. The days and nights get easier, however with a moving toddler you’re scared with every bump that he might get a bruise or worse and you’re back in the nightmare. 

Once we all settled into family life again things were much better. He developed some really bad temper tantrums which I think was his way of testing what he could get away with. One temper tantrum led him to bump his eye against a high chair and gave him a black eye. With a paediatrician appointment the following week I thought ‘that’s it, he will be taken away’. The paediatrician was understanding, amazing in fact. We had a new one once our son came home and he couldn’t do enough for us. We also had a new health visitor and speech and language therapist who have also been very supportive. Everything is falling into place the way it should and finally we can relax.

When he came home he was quite clingy and looking back now it seemed like he was afraid we would go again and never come back. We are now a lot more relaxed and things are going great. He gets bumps now he’s walking but I just think life is too short to worry what might happen. He needs the space to explore and expand his development but he defiantly doesn’t do anything from a height now even if he does like climbing! Toddlers have falls and bumps and this is entirely normal. I would never not seek medical attention for him. You wouldn’t know anything has happened to him apart from the scar from the operation. He is coming off his epilepsy medication and developing fast.

I hope that this can help one family feel they are not alone. I’m not hateful towards social services, they should intervene (we could have been child abusers for all they knew). It is just frustrating that they don’t look at medical history properly and no one speaks to you to tell you what is going on. Maybe if they did this, things could have been resolved sooner. Stay strong, keep being honest and most of all be yourself 

Thank you for reading. There’s so much more I could write but hope what I have written has been enough to give an outline of the ordeal we went through.