"I was handed a form to sign with no explanation- it was to decide what I wanted done with my baby's remains...She wasn't even out of me"

A mother's experience of Oxford University Hospitals Maternity Services in 2022:

I fell pregnant with [daughter’s name] in June 2022 at the age of nineteen.

I had experienced previous miscarriages and had a family history of complex pregnancies, so I contacted my doctor's surgery – [surgery name] - straight away. I had my first midwife appointment on August 01st 2022, with a midwife called [full name]. I was declared a high-risk pregnancy and was under the Lotus team. I discussed the family history of pre-eclampsia and other complications. I was not referred for consultant care or any of the prenatal teams.

I began experiencing morning sickness around this appointment. I was told it was normal and that it should improve by 12 weeks of gestation.

The nausea and vomiting only got worse. I began vomiting small amounts of blood and could no longer keep anything down. I phoned my GP surgery multiple times and felt they were not taking it seriously. I was eventually placed on prochlorapazine (an anti-sickness medication), the doctor briefly mentioned a condition called hyperemesis gravidarum (severe morning sickness was the word he used) and sent me home.

On August [date], at 7 weeks pregnant, I collapsed after vomiting multiple times. I attended the accident and emergency department at the John Radcliffe Hospital, where I was told that I had a sprained ankle. They explained that they had consulted a gynaecologist who said I did not need to be seen, and if I get abdominal cramps, I could self-refer to EPAU. I was then discharged with crutches.

I followed the advice given, and due to ongoing pain, I self-referred to EPAU, where I was seen on August [date]. They scanned me, and the pregnancy was confirmed to be viable. I attended the Emergency department again on August [date] due to worsening of vomiting blood and feeling generally unwell with heart palpitations and raised heart rate. An ECG was completed and signed off as 'unremarkable'.

Gynea came and discussed being placed on additional anti-sickness tablets, but I would need to go to my GP for this to be done. I was then given IV fluids and discharged home. On September [date], I collapsed again at home. I was 13 weeks pregnant by this point. Still experiencing Nausea, and at this point, I was taking three different anti-sickness medications. This episode was diagnosed as a vasovagal syncope episode due to plummeting blood pressure when in an upright position, and I was sent home again after being under observation for a few hours. They indicated that there was no need for me to be reviewed by gynaecology.

I then presented to A&E for similar reasons, along with light spotting on October [date]. Blood tests showed my White blood cell count was 13.5, and there were raised ketones in my urine. Gynaecology again refused to review me, according to the AE doctors, and I was discharged home.

At my 20-week scan, we were told that we were having a baby boy. We went and bought cute outfits. We found out [daughter’s name] was a girl in the operating room, and later a consultant had to triple check, as on all of her NICU notes it said she was male.

Throughout the weeks between 16 weeks of gestation and 26 weeks, I visited the Maternity Assessment Unit multiple times. I had symptoms such as bleeding, fatigue, vomiting, abdominal cramps and high heart rate. The highest my heart rate had reached was 240 BPM, as recorded on an NHS-approved oximeter. I was unable to leave the house most days and spent over 17 hours a day asleep.

Every time I attended MAU, I felt unheard and mocked. I was told things like 'it's your first pregnancy that has reached this stage and you're young, so you wouldn't know what to expect' and any concerns I raised were put down to mental health. I was advised to take baths, drink plenty of water and rest.

Eventually, at around 22 weeks of gestation, my heart rate stopped returning to baseline; it was averaging at 130 bpm, which was recorded whilst in the MAU department. Consequently, I was referred for a non-urgent 24-hour tape (this never happened due to waiting lists that exceeded my pregnancy), and I was then discharged home.

At 26 weeks pregnant, the bleeding got heavier. By this time, I had been having cramps in my lower back and abdomen for weeks. I again attended MAU, where they informed me that I was now able to go on the fetal monitor. They attached me to it and left. The midwife then came back a little while later and fiddled with the machine. She asked if I had felt movement, and I explained how I was told that my uterus tilts towards the back, and that I was told it was normal that I hadn't felt much movement this early on in the pregnancy. She left the room and said that the baby hadn't quite met the criteria yet.

Five minutes later, a male doctor walked into the room. I was alone, as my husband had stepped out to contact family. The doctor leaned down next to my bed and said that he believed my baby had a condition called hydrops and that they needed to get the baby out now via C-section.

Multiple midwives and doctors started rushing in and out of the room, and I remember the emergency alarm in the background. I was handed a form to sign with no explanation- it was to decide what I wanted done with my baby's remains and had tick boxes for each option. She wasn't even out of me, and I was deciding if she should be cremated with other babies at the hospital or whether I wanted to organise her burial myself. From that moment, I was forgotten.

I was ushered into a gown and compression socks and then into a wheelchair. They wheeled me round to what I now know as the delivery suite and into another room where everyone was asking us questions and getting me to sign consent forms. I had multiple injections and cannulas inserted.

During this time, I remember a midwife yelling at everyone to stop; she had realised that no one had introduced themselves or even explained to me what was happening. I was then taken to the theatre, where the C-section was completed. When they opened me up, they found my waters were green from severe infection.

We were told we had a boy, until the doctors treating her said 'no, it's definitely a girl’. [Daughter’s name] was then taken away to intensive care, and I was moved to recovery. I was provided with no update on her. My husband was asked to leave recovery due to 'visiting times'. I was by myself.

The nurse came in to do observations, handed me little syringes, and said I needed to collect my milk in them. She then left, saying she would be back later to collect them. I messaged my husband when I could feel my legs and bear weight. He came and got me from recovery and wheeled me to the NICU. [Daughter’s name] was on CPAP, which was amazing for a child of her gestational age.

The neonatal doctor told us about the risks and handed us a piece of paper with all the statistics: death, blindness, brain bleeds, and long-term disability risks. We had to fill out emergency contact information and other forms. We spent an hour with [daughter’s name], and then we were told to get some rest. [husband’s name] went home, and I went to get some sleep on the ward.

The next day, my husband arrived on the ward. My phone died the previous night because I didn't have a charger. He looked at me and said, 'you haven't been told have you?'. [Daughter’s name] had stopped breathing during the night; she was now intubated and had turned Septic. Not one person in the maternity ward or the neonatal unit had come to tell me, even after Marley explicitly asked them. I believe I was either discharged home that day or the following day, with the requirement to return on day 5 for post-op checks.

I had received no antibiotics, spoke to a doctor once and had limited observation checks because if I was in the NICU, it meant I missed them. At this stage, we lived in Littlemore, which was two buses to the JR or a 20-minute walk and then a bus. Both were very difficult, less than a week post-C-section.

At my day-5 check, they realised my c-section was infected and I was prescribed antibiotics. We attended the NICU every day, other than a period of two days, during which I had cold symptoms. [Daughter’s name] ended up with numerous complications and was under neurosurgery in the NICU.

She has required multiple brain surgeries. Her first was in January of 2023. We had been told that neurosurgery needed to discuss with us, but due to the 2-hour travel and their busy schedule, we often missed paths. No concerns were discussed with us regarding the failed contact. We later found out that the NICU and Neurosurgery had been trying to contact us by phone. It was not until [daughter’s name] was 9 months old that we found out that they had been calling and leaving voicemails on my mother's mobile number.

To this day, no one has offered us an explanation for how that number ended up being on [daughter’s name]’s notes as next of kin. To reiterate, the entire time she was there, they left voicemails on my mother's phone, breaking confidentiality, and never told us they had been trying to contact us, even though they couldn't get through.

It also came to light in a meeting with the consultants that the nurses had been marking us as 'not there' on the charts and not recording when we rang before we went to sleep and when we woke up. We were told that if you step out of the NICU when they come to do observations, they mark you as not there, even if you return 5 minutes later.

A few weeks later, we began our training on feeding tubes. The nurse explained that if the pH of the stomach contents is too high, you use the syringe to push air down the tube to lower the pH. She showed this to us on [daughter’s name] and signed us off when we had done multiple feeds in front of her.

A week later, I was completing a feed when a nurse came up behind me and said 'what are you doing?'. She told me that I could have seriously harmed her. I explained to her that we had been shown and trained to do this, and that she should call the consultants and the sister in charge. They took the nurse's name and checked [daughter’s name] over. They explained that during COVID, many NICU nurses were hired from overseas and trained differently. I asked if it was as dangerous as the other nurse said. Their faces changed, and they said it wasn't in this case and that [daughter’s name] is fine. We never heard anything else on the matter, but still had to continue reminding nurses that it should not be done.

Other times, we walked into the NICU to see her blood dripping down the side of her incubator on the floor, where they had forgotten to clean up after taking bloods. Plastic bits were also left next to her. We were reprimanded for having too many teddies for her and told that she could only have one.

Eventually, [daughter’s name] was moved to the high dependency unit. We explained to HDU that we didn't want her to be using a dummy all the time. They gave her a dummy anyway. I knew her speech would be delayed, and I had read about further delays being caused by dummies and wanted to prevent them. I had witnessed [daughter’s name] deteriorating after feeds and raised concerns that she had an unsafe swallow. This was shut down, and I was told she just needed time.

I pushed for a speech and language review, where they assessed her and found she had an unsafe swallow. However, the nurses still failed to abide by the plan put in place by SALT.

On January [date] 2023, I arrived at HDU. I changed [daughter’s name]’s nappy as usual and got her out for cuddles. At this point, [daughter’s name] was still too small for clothes. I was adjusting her blanket when [husband’s name] noticed a plaster on her spine. [Daughter’s name] had a lumbar puncture just after Christmas, but we did not know whether one had been completed since then. We spoke to the nurse who escalated the issue.

In the meeting with her consultants, we were told that another baby named [daughter’s name] in the room next to us required a lumbar puncture, so it needed to be looked into. Later that day, we were pulled aside and told it was probably a plaster that had been there for over 4 weeks. The other [daughter’s name] had her lumbar puncture, so there was no mix-up. I know my daughter did not have a plaster on her back when we left her the day before, and a plaster that had been there for over a month, as claimed, would not have remained unnoticed by me or [husband’s name].

Our story could go for many more pages.

OUH services are still letting [daughter’s name] down to this day. One thing that remains constant is doctors' refusal to listen when patients express concerns or possible health conditions. An example of this is waiting in AE for hours when I was advocating that her VP shunt, treating her hydrocephalus, was infected. The next morning, I was told I was right, and [daughter’s name] was taken to the theatre.

Less than 24 hours later, [daughter’s name] experienced seizures complicated by cardiac arrest. [Daughter’s name] has been left with numerous health conditions. She has cerebral palsy, epilepsy, dysphagia, hydrocephalus and now a trapped fourth ventricle. If the fourth ventricle compromises her brain stem, she will no longer be with us, and we have to live our lives daily knowing she could be taken from us at any moment. The operation that could fix the issue carries a 25% chance that she will need long-term hospital care and will not come home.

[Husband’s name] and I genuinely believe that if I had been taken seriously during my pregnancy when expressing concerns, [daughter’s name] would be in a completely different position today, and we will continue to fight until she gets the justice that she deserves.

I later went on to have a second pregnancy to term, where I experienced similar failures from the OUH maternity service. [Son’s name] was born Septic, requiring CPAP, but is now healthy and doing well.