Dear Coroner,
A year ago my beautiful daughter died a totally preventable death in full term labour.
Growth restriction, where the placenta stops working so well is very common, affecting 8% of pregnancies in the UK. It is a massive risk factor for stillbirth, but if monitored and managed appropriately with basic care, is not fatal. I was deemed high risk of growth restriction from 20 weeks pregnant.
The trust I was in went against all national guidelines and stopped all my scans at 36 weeks pregnant, but offered and agreed my induction over 5 weeks later. I wasn’t comfortable with this in the last weeks of pregnancy so I called up and asked if I could have a scan, but was told by the midwife ‘no we don’t do that’. I had naively assumed they didn’t do it because it was safe.
I asked if I could have my induction 2 days after my consultant originally offered, knowing that induction takes time and gets pushed back a lot due to pressures so assumed 2 days would be safe. My consultant agreed it without issue, just stating it was ‘fine’ when asked. I has previously asked if my induction needed to be earlier due to gestational hypertension, but he said ‘no not if it’s controlled’. I had asked what the stillbirth risk was of one of my risk factors (an abnormal uterine artery blood flow), he told me it was about an extra 1 in 1000 over a low risk woman. I’ve since researched and one study says it’s a 7x higher risk, another systematic review 3/4 times higher risk. The hospital’s own research shows you can be up to 33 times higher risk of your baby dying.
In the last 8 days of my daughter’s life my midwife measured my bump and it had gotten smaller. This is a sign of potential growth restriction. My midwife reassured me it was just my baby’s head descending into my pelvis but referred me for a scan.
I sat at home on maternity leave waiting for the scan for that day and the next day. By the second day without hearing back, I called. I was just told there was a note saying ‘scans aren’t accurate’ and ‘bring induction forwards’. I was totally confused as my midwife was telling me everything was normal. I googled and saw the research shows that scans are just as accurate at term as any other time, if not more accurate. I also knew scans can check blood flow and I thought it could show if I needed a caesarean (it can). I knew it was the safest option to see what was happening before making a decision and I wanted the basic care for my child so I pushed for the scan. I called 44 times one day. Midwives just kept saying ‘scans aren’t accurate at that gestation’. Nobody even attempted to bring my induction forwards.
I was seeing my midwife the next day and trusted she would sort it out as she had referred me for the scan so, as I wasn’t getting anywhere with the calls, I stopped calling after 3.5 hours. It was making me very stressed and I had gestational hypertension and needed to keep my blood pressure normal.
I saw my midwife and against all guidelines she re-measured my bump and wrongly reassured me again that it was my baby’s head in my pelvis. She said it was now within the limit considered ‘normal’ by the trust, so I wasn’t in the criteria for a scan anymore, even though it was still below my measurement two weeks before. I asked her why would I bring my induction forwards if there wasn’t a problem and confirmed that of course I would want to bring my induction forwards if there was a problem. She had no answer and referred me for an urgent consultant appointment. She couldn’t find my baby’s heartbeat in this appointment, but still didn’t send me in to hospital as she should have done. My baby was alive then though, her heartbeat was checked at another midwife appointment days later and she was moving.
I spoke to my sister who was incredibly worried about the care as she’s a midwife in another trust and knows what all midwives should know, that growth concerns are incredibly serious. She called on my behalf. They were rude and told her nobody would speak to her because of data protection. My midwife called me in response to this and asked if I wasn’t happy with the care. I’m increasingly stressed at this point and just say I need the scan. She says she sent in the request again. I’m not happy with this so I tell her I’m going to call the maternity unit version of a&e.
When I call I explain I’m high risk, anxious about the growth of the baby, etc. and need a scan. The midwife goes to speak to my consultant. Through this midwife he says ‘scans aren’t accurate’ and ‘you wouldn’t benefit’. I tell her that what they’re doing is against NICE guidelines and that even if it was true scans aren’t accurate at that gestation (it’s not) then it can still check blood flow. (Scans can also check amniotic fluid volume, abdominal circumference, fetal movements and blood flow in the umbilical cord and brain to check for growth restriction). The midwife comes back to me and says he’ll call me 3 days later, on Monday, to ‘come to a compromise’. I’m not happy with waiting, but feel there is no choice. I stop chasing the scan and trust that my consultant and the NHS in general will keep my baby safe, whether I get the scan or not.
Three days later, on Monday late afternoon my consultant calls me. He tells me (against all national guidelines) that the trust don’t do scans after 40 weeks pregnant as they prioritise giving all women an extra scan at 36 weeks in the trust. I’m disgusted but I don’t know what to say. He asks me when my induction is and I say Wednesday and he says ‘fine’. He expresses no concerns during this call and never discusses bringing induction forwards. I think what they’re doing is incredibly dangerous and I’m becoming absolutely terrified of going into labour and putting myself in the hands of these people who don’t listen and don’t follow the guidelines. I think to myself ‘a baby could die’ with what they’re doing, but I never think it will be my baby. I plan to make a complaint after giving birth. It’s 6 days since my bump height was found to have dropped.
A day and a half later I got into labour, hours before my planned induction. I call the hospital and they tell me to stay at home, despite me having about 4 contractions in 10 minutes. The NHS website said at the time to only call if your contractions are ‘at least 60 seconds’ long and mine aren’t so I think it’s fine to stay at home. My partner gets me to call the hospital a few hours later and just tells them we’re coming in. When we get to hospital we’re told our baby has died. I then still have to go through about 17 more hours of labour before she is born knowing that she died. I thought I had gone to hell or was trapped in my worst nightmare.
She died because the placenta failed which they knew I was high risk of from 20 weeks and there were signs of 8 days before she died.
I later found out:
– Staff had missed protein in my urine in the last week of my daughter’s life
– My consultant should have admitted me to hospital my blood pressure was so high in our one f2f meeting
– My induction should have been much earlier and the trust changed their policy to between 1-2 weeks earlier.
The clinical director came to cover up for her husband who refused the scan two weeks after our baby died. She lied saying ‘the scan wouldn’t make a difference’ and told us our daughter was born a ‘normal weight’ when she was on the 9th centile and previously was on 30th at my last scan according to a chart customised to my demographics. When we asked more about the scan she said the trust ‘dont have the numbers’ for scans after 40 weeks. The numbers can easily be found in minutes online. She tried to pass off the blame to me by saying ‘we did mention stillbirth’ and you did book your induction 2 days outside the policy. I was already with the crisis team, after this I felt even more suicidal.
In the trust’s internal review of my baby’s death they said the care was according to guidelines, they monitored growth appropriately and the issues was that I didn’t ‘trust the clinical advice’ regarding several aspects of my care. They said different care would make no difference to the outcome.
We got an external investigation as my baby died during labour, but my consultant lied saying that I indicated I didn’t want to be induced and that he advised the earlier end. The doctor who refused the scan twice said he was getting ‘anxious’ about my pregnancy, but didn’t bother to call while denying my basic care.
The external investigation did find some of the issues and guidelines not followed. It says the scan most likely would have shown a problem. Most of what they found I had worked out already from looking through my notes with my sister. If my daughter had died before labour we’d only have got the 45 minute internal investigation where no learning took place and a baby could die in the same ways again.
Our daughter lost her entire life and mine and my partner’s lives are completely destroyed. I’ve worked for the NHS as a nurse and a therapist and I wrongly trusted it with my daughter’s life.
The trust delayed our daughter’s funeral because they wrote on her death certificate she died before labour which wasn’t true. My partner made them change it. She was moving absolutely fine up until labour. Intrapartum stillbirths don’t look good for a trust.
It was written all over my labour notes ‘offered induction and declined’ when I never declined induction. This was also written on the post mortem request form which I found incredibly distressing.
Coroner’s need jurisdiction over term stillbirths when there are care issues. A genetically healthy human being lost their life because they were denied the most basic care so they got deprived of oxygen. These staff members who totally failed have not had to stand up and justify their actions. So many mistakes happened and it needed a coroner to try to prevent them happening to anyone else. Without my sister being a midwife we wouldn’t know half the mistakes and I’d just be left blaming myself.
Another woman I met at a baby loss group was denied a scan by my consultant a few years before and her baby died. She was told when she complained to PALS that they prioritise the extra 36 weeks scan for all women and that’s why she wasn’t scanned. If the trust had learnt from this baby’s death then my baby wouldn’t have died. I wonder how many other babies have died after being denied the basic care of a scan in the trust.
This is my story as a: Patient
NHS Trust (or Provider): Oxford University Hospitals NHS Foundation Trust
Timespan: A year ago
Did you complain?: Yes
Did the Trust (or Provider) retaliate?: Prefer not to say or N/A
Would you recommend PALS as an impartial intermediary?: Prefer not to say or N/A
After investigation, did the Trust (or Provider) respond satisfactorily?: Prefer not to say or N/A
Did you take your complaint to the Ombudsman (PHSO)?: Yes
Your ethnicity: Prefer not to say
Have you experienced suicidality due to this?: Thoughts/feelings
Are you autistic?: No
Are you disabled as defined under the Equality Act 2010?: No
