A mother shares her experience of finding answers after birth injury

When Emma’s* baby was diagnosed with hypoxic ischaemic encephalopathy (HIE) at birth and transferred to another hospital for cooling, this set in motion an HSIB investigation into her hospital maternity care and a referral to the NHS’s legal defence team at NHS Resolution.

Dazed and disoriented from her difficult birth experience, Emma found herself swept along by her baby son’s neonatal care and then by HSIB’s investigation, but she had already convinced herself that she was to blame for her son’s injury.

Maternal feelings of depression and self-blame after birth injury

Emma recalls, “Initially, straight after Adam* was born it was almost like it wasn't real. We were living it. We were visiting him in NICU [neonatal intensive care unit], but it didn't feel real and everything they were telling me about him potentially having HIE never sank in.

“I remember feeling like I was floating, like being carried away with, ‘Yep. I've got to go here. Yep. He's got to have this scan. Yep. He's got to have this MRI’, but not really taking it all in, until he came home and then there was a huge sense of guilt and feelings of ‘Whoa, what's just happened here? Now he's home, but I have no idea what's happened these last few weeks.’

“I took a lot of it on myself. As a mum, I questioned whether I had done something wrong during the birth, and because he’s my second [child], I thought I should really know what's going on here. I should have known that this didn't feel right. I should have said something. I didn't feel like I had advocated enough for myself during the labour. But we were grateful that Adam was home and I dealt with my own guilt myself. I fell into post-natal depression following his birth, because that was a really difficult time, and I think the guilt did consume me.”

Maternal guilt is usually unjustified after birth injury

Emma’s feeling of guilt in response to her baby’s HIE diagnosis is very common amongst mothers of birth-injured babies but was totally unjustified. In the early stages of Emma’s labour, she had spoken to her midwife about her concerns and had asked for a caesarean section. Her request had been dismissed by the midwife, who had neither noted the request nor raised it with an obstetrician, despite Emma’s complicated medical history, fetal growth concerns during her pregnancy, and her previous caesarean section, which meant she had a right to be fully informed and discuss her preferred mode of delivery with a senior obstetrician, as there were increased risks to both mother and baby from a VBAC labour.  Adam was eventually delivered by emergency caesarean section, but only after significant delays following signs of fetal distress on the CTG fetal heart monitor.  He was diagnosed with HIE brain injury and treated with neonatal intensive care and therapeutic cooling.

More questions than answers from HSIB’s investigation

NHS maternity services are required to report to NHS Resolution (the NHS’ legal defence organisation) and MNSI (formerly HSIB) whenever a baby suffers an HIE birth injury. When a case is reported, MNSI carries out a maternity safety investigation and refers its findings to NHS Resolution, whose legal team prepare to defend the NHS maternity unit from any potential birth injury medical negligence claim.

A few weeks after Adam was allowed home from hospital, HSIB contacted Emma and her husband, Stephen, and told them that they were carrying out an investigation.  

Emma recalls, “We agreed to the HSIB investigation because we were told it was just part of the procedure. Adam had  been to NICU and had cooling treatment, so it was something we were going to have. I went with it, thinking ‘Let’s try to get some answers’, although by that point I'd already kind of accepted that it was my own fault.

“They did a preliminary sort of investigation and then had a little initial meeting with us following some brief findings, and they told us about the couple of things they had found. My heart sank because I realised that errors had been made with issues within the procedures that they had at the hospital. I wanted to continue with the investigation to find out more, but it felt odd for me to think, ‘Hang on, I wasn't to blame. It was someone else’.

“Then, I think almost six months after Adam was born, when he was already having regular check-ups and treatment with physio because we were being treated as though he had HIE, I had a call. I still remember where I was, because over the phone I was told the safety recommendations by the HSIB. The woman just read them all out to me.  It was a really quick phone call. I remember looking back and it was five minutes in total. I couldn't process it all. I just thought all of these things happened that could have led to what happened to Adam; things that, in my opinion, could have been prevented. It really upset me.  

“We did have a meeting eventually, but that took a little while to arrange because the lady running our HSIB investigation ended up going on long-term sick leave and we were handed from person to person. So, we ended up not having our in-person meeting for a couple of months, but we did have it eventually. The meeting was with the lady that took over our investigation, and her senior. We weren't told if any medical experts had been involved. We were told it was all handled by HSIB. I asked questions throughout the meeting and kept receiving responses sort of saying ‘I'm not a medical expert, but maybe ask your paediatrician. I know a little bit about this and this is all I've got from the medical notes.’  As  she didn't actually write up the majority of the report, she didn't have much for us, which I felt disappointed by because, whilst I appreciate that she didn't write the report, I would have hoped that she would have read up on the case a little bit more and clued herself up before speaking to us. So, we didn't get much from that meeting. It was quite brief and it felt like we knew that report a bit more than she did, actually.”

Seeking medical advice from knowledgeable, specialist solicitors after birth injury

After hearing that HSIB’s investigation had found mistakes in Emma’s maternity and Adam’s neonatal care, Emma and Stephen were left with questions that the investigation couldn’t answer. Whilst Stephen started looking for specialist lawyers who could help answer their questions, Emma was still struggling to come to terms with all that was happening.

“We'd never really considered the legal route of taking proceedings or anything like that, up until this point, because  again, I kind of thought it was my own fault. I didn't know that it could be anything due to the hospital. I didn't even know that that was a route we could have explored, until the HSIB people recommended us to an organisation called NHS Resolution. When I googled them, it was an NHS sub-category that looked like it was to do with giving out something similar to compensation. And when I looked into that, I thought, ‘Hang on, as a result of this finding, you're sending me here? Are we missing something? Has something happened here?’

“I was still really upset by everything that was happening and still battling post-natal depression, but Stephen wanted more answers. I was against it, simply because at the time I couldn't handle it, but Stephen had already decided he wanted to seek some sort of some legal support to find out if there was anything more, because we didn't feel like we had that much in front of us. We had also read some case stories on charities’ websites about the needs that children with HIE can have in the realms of mobility etc. If Adam had any long-term issues growing up, we might not have the funds for that, so we wanted to be covered just in case. I remember thinking, ‘We can do that later, if he needs it,’ because I really didn't want to, but Stephen thought we should do it now as it could take a while.”

Finding solicitors and getting answers after birth injury

Looking back, Emma recalls, “I didn't really know why we were doing the legal investigation. I didn't deal with any of the initial communications or read all the documents we were sent.  Stephen dealt with all of that as Adam’s ‘litigation friend’ because I just couldn't deal with it. There were points where I thought, ‘Are we sure we want to do this?’ But now I am so glad that Stephen did, because as the findings from all the medical experts came in, periodically, over the last two years it was reassuring that in every document we got so much more information than we had ever had about HIE, about the scans and about the treatment. We felt more and more reassured every time we had more communication from Boyes Turner, because we’d get a good, lengthy report to digest and it was quite in-depth.

“When we were looking for legal help, we had wanted to work with a lawyer who was knowledgeable about HIE.  We took quite a few initial calls with a variety of different people, but it was Richard Money-Kyrle’s knowledge of HIE that made us choose Boyes Turner. In the first two phone calls we had with him, even prior to signing any paperwork, he told us more about HIE than we had learned from anywhere else, and we felt that he knew the situation well and was informing us. I remember saying to Stephen that we learned so much more about HIE from Richard at Boyes Turner than from our son’s paediatrician. Isn’t that crazy! An expert medical negligence lawyer, who works with this regularly but is not a doctor, was telling us a lot more about HIE than our own paediatrician.”

After a full legal investigation, our team of medical experts were critical of many aspects of Emma’s and Adam’s hospital care but concluded that Adam’s injury had actually been caused by a thromboembolic ischaemic stroke earlier in the pregnancy. In addition to reading the experts’ reports, Stephen and Emma were able to attend a meeting with our legal team and the medical experts and gain a better understanding of Adam’s injury and its causes. 

“That was really helpful for us and following our meeting with the barrister and all the medical experts, we’ve both had so much closure. We learned about what actually happened to our son. We were able to ask questions and felt really comforted about our worries both past and future. It has really put us at ease now, knowing what happened to him. For me personally, there’s a relief from knowing that Adam’s stroke wasn’t severe and is something that just happens.  If we hadn’t had that, we would still be going on a diagnosis of HIE. It’s not severe, but we’d be looking for it, you know. So, I don't have to put blame on myself or any of the doctors. I now have a huge weight lifted off my shoulders and I don’t feel any self-blame anymore, which is fantastic, because it's taken two years to shift it.”

No grounds for a claim but an ideal outcome

Is Emma happy with the outcome?

“When we first started this, I said the best outcome wouldn’t be having a multi-million-pound payout. That wasn't what I was interested in. The best outcome for me would be if our son was alright, and that’s what we got. There is no amount of money or time that we would have given to have that outcome. That was, for us, the best outcome. So, we're really happy.

“After the HSIB report we had a lot of questions, and doing the legal investigation has actually shown us that the HSIB report wasn't the greatest. We know we trust the medical experts’ opinions and their findings. We know they've looked into it arguably more than HSIB’s investigators. We feel like we have answers about the birth and we know now what happened to Adam. That's all I really wanted.”

Emma and Stephen are not alone in the feelings, fears and confusion they faced in the months that followed the traumatic birth of their baby. Their search for answers and understanding became an increasingly vital key to Emma’s healing and their peace of mind about their son’s wellbeing after their concerns were heightened by their communications with HSIB.

We advise all new parents, who have had a diagnosis of HIE birth injury for their child, or who have been contacted by NHS Resolution or HSIB, to seek independent, claimant-specialist legal advice. We are pleased to have been able to help Emma and Stephen find the answers they were seeking after the birth of their son and grateful to them for allowing us to share their experience.

At the end of their investigation, Emma and Stephen kindly commented:

“Just wanted to say thanks again to everyone at Boyes Turner and the experts for providing answers and explanations regarding HIE as we have learnt so much more from this process than from the NHS.”

*names have been anonymised

If your child has cerebral palsy or neurological disability as a result of medical negligence or you have been contacted by HSSIB/MNSI or NHS Resolution, you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.