I had what you could call a “normal pregnancy.” Other than the placenta slightly covering my cervix at 20 weeks, the follow up 32 week scan was fine. All was well. Otterley was doing great.

It was at this point the excitement really kicked in that we were due to be blessed with another bundle of energy, a baby sister for Darcy. Women don’t get to 32 weeks in pregnancy and then not have a baby do they. I was convinced she would come early. As her due date of June 25th approached – I was down to my last weeks of work before maternity leave so I went into hyper nest mode. I ordered her pram, her play mat, baby grows, dummies, we finished her nursery, Darcy and I practiced changing nappies and practised saying her name. We allowed ourselves the excitement of planning a life with her, of imagining how she would come into our world and complete it for the better. In some ways it was actually even more exciting preparing for the second baby as we knew what to expect – and hearing Darcy ask after baby sister while she cuddled my belly was magical.

Otterley was a kicker. That baby girl gave me such big kicks I googled if it was possible for a baby to kick itself out of your tummy. Her favourite time to play karate in my belly was Darcy’s bedtime. As I lay reading Darcy her bedtime stories – Otterley would kick away at me and it was always my favourite time of day.

 
I was just over 34 weeks pregnant when one Monday night I realised I hadn’t felt her kick during bedtime. I sat watching TV, patiently awaiting that big kick to reassure me. I’ll go to bed and she will kick me at 4am I thought – another of her favourite times to party against my bladder. I woke in the morning and realised I hadn’t felt an almighty kick all night, so I did what you are told to do. I called Triage. They told me to come in. I was hooked up to a CTG machine to check for the baby’s heartbeat. After some fussing with the machine, the midwife found her heartbeat and we breathed a sigh of relief. She’s fine.

Otterley had a heart beat. But the CTG machine is assessing the babies wellbeing under the Dawes–Redman criteria of normality which cover many aspects of the CTG including “short term variation, fetal heart rate, accelerations, deceleration, fetal movements, fast sinusoidal patterns and the electronic quality of the trace.”
You are also asked to press a button when you feel a movement. I hadn’t felt anything. The machine told us after 30 minutes we had failed the criteria because there had been no movement but more importantly – no accelerations. To me – a heartbeat was a sure sign the baby was OK. What I only know now, is that they also need to see acceleration in the heart beat that typically occurs when a baby moves around. If the baby isn’t moving, it could be a sign that the baby is trying to conserve energy because something isn’t right.

 
The midwife gave me biscuits and told me to eat some sugar because perhaps baby was sleeping. The test continued. I still hadn’t pressed that button because I still hadn’t felt her move. After some further waiting on the machine, it turned green and we were told we had passed the criteria. Relieved but also partly confused – “but I still haven’t felt her move” I told the midwife. I was told that since I’d just had my 32 weeks scan and growth was perfect, it wasn’t a worry. It sounds ridiculous now, but the midwife wore a badge reading “lead midwife” so I had no real reason not to think I’d done all we could to check on Otterley. Neil and I both left that hospital with an uneasy feeling but also took comfort in the belief the hospital would not have sent us home if they didn’t think she was OK.

Later that night I still hadn’t felt her move. I lay in bed and began looking at the kicks count website - Kicks Count is the UK's leading baby movement resource and awareness campaign. I found myself reading stories of families who’d had reduced movements and went on to lose their babies. The statistics of how 1 in 250 pregnancies ends in still birth terrified me. I felt sick with worry and felt tremendous sadness for those poor families who had lost their babies and wondered how they had found the strength to get through it. At 4am I felt the smallest flutter of a kick but that was all. In my darkest moments I recall this as her goodbye kick to me.

The next morning I told Neil I still hadn’t felt her move and called Triage again. If you come in now we are quiet and can see you straight away they said. Neil had to sort Darcy for nursery so I said I’d go down quick, get checked over and he would meet me after if I was still hooked up to the machine. The fact I went alone shows how reassured we both were that the heartbeat we had heard the day before was a sign she was OK.

I was again attached to the CTG machine. The midwife struggled to find Otterley’s heartbeat. She couldn’t work out if it was mine the machine was picking up or Otterley’s. I began to panic, my heartbeat increased, I got dizzy. I was told to lay on my side. Unbeknown to me the room began to fill with people. All I remember is turning my head and seeing a man with a scanner say they needed to scan me because they were worried about baby. I had to look away from the machine. “I’m so sorry, there is no heartbeat here.” I have never heard my body make the noise that came out of me at that point. It was primal. It was physical pain that felt like my heart was in a vice.
“She’s gone” was all I could manage to say to Neil through uncontrollable tears.

I was led to a room which I now understand to be the room women like me are taken to. Away from the other women giving birth and the sound of screaming babies. The sudden realisation we had lost Otterley but still had to deliver her came crashing down on us. If I ever find myself on a maternity ward again, I know I’ll be quietly looking out for that room.

We had time to go home and collect some things for the days ahead. Numb with pain we found ourselves back at home, in her nursery, surrounded by boxes of deliveries of her things I’d only ordered in excitement the week before. Standing over her cot, with Otterley still inside of me, knowing she wouldn’t be coming back with us, will remain one of the saddest moments of my life.

Otterley was delivered by c-section later that evening. They discovered a true knot in her umbilical cord. We await the results of the post-mortem to ascertain if this was the cause of death.

We were desperate to see her. I was taken back by how beautiful she was. I was expecting to see a baby who had been struggling or been unwell. She just looked like a peaceful baby sleeping. She was big at 5lb 10oz and had Darcy’s baby nose. We held her and we cried. We cried so hard I never thought the tears would stop. The love for her was just as intense as if she had been alive.

 
We are both so grateful for that room. It became our own bubble for two days where we could be with Otterley and say all we had wanted to say to her. I slept with her on me that night. She will never know how the weight of her comforted me during that night as she lay across my heart and for a small moment in time I could believe she was just a sleeping baby on me. We rocked with her, we walked with her, we told her how sorry we were we didn’t get to meet her.

 
Otterley was rested in a cuddle cot – a cot designed to keep babies like Otterley cool. When a baby dies, there is a short window of time for a family to create memories, say hello and goodbye to their child and the lifetime they had dreamed for them. That cot gave us that window with our baby and I couldn’t be more grateful for it.

We were also given a box of things we could use to make memories. We are so thankful for that box. We will treasure the memories we were able to make with the photos and her hand and foot prints, and the teddy we were able to leave with her, with an identical one we could take home to her bedroom. In the hours after being told you have lost your baby – you can barely fathom which way is up, the world spins and you use all you have inside of you to get through each minute. You can’t comprehend the life you had planned 24 hours before now looked so different. Alongside answering questions on how you want to deliver your child, post mortems and funeral plans - the idea of trying to think of how I could memorialise those moments with Otterley wasn’t even on my mind had it not been for this memory box. I am so sad for any family that left a hospital without the opportunity to have one, only to get home and wish so much they had more than a memory in their mind to remember their baby by.

I have spoken to women since this happened, who lost their babies before such charities existed and there wasn’t anything like this. No separate room away from crying babies, no opportunity to take photos or handprints, no cold cot to have those precious moments to say goodbye, no follow up support for their mental wellbeing in the weeks after, no training for midwives on how to offer grief support during this time. This has all been pursued by charities you never know about until you need them.

You never imagine something like this could happen to you. We certainly never did. When you get thrown into a world of still birth, you realise that there are so many charities working hard to try and make this unbearable time as manageable as possible for the families impacted.

4Louis is the charity who provided us our memory box. 4Louis is a UK charity that works across the country to support anyone affected by miscarriage, stillbirth and the death of a baby or child. They also work to improve the care bereaved families receive from health care and other professionals.

 
They raise money to be able to provide those memory boxes to parents in their hour of need who can barely understand living without their child, let alone think about how to create memories with them in the short time they have.

 
With 1 in 250 births ending in a still birth – families will continue to endure this pain and our only hope is we can raise a small amount of money that can go towards making the unbearable torment feel a little less alone for them.

We await the results of Otterley’s post mortem and will continue to share anything we learn with as many people as we can, if it can stop or support one other family going through what we have.

Update

The post mortem of Otterley confirmed she died of acute hypoxia
caused by a true knot in the umbilical cord.

Since Otterley died under NHS care, there has been an independent
review into the care I received throughout my pregnancy. A
multi-disciplinary panel met to ‘walk through’ the events and to consider the care and decision making at each stage. This
is done with the goal of uncovering any failings on the part of the NHS and to
try and learn from our terrible situation.

Part of me wanted to tell this investigation to go to hell. We
didn’t have our baby and I wasn’t interested in learning lessons from it. Nothing
I found out could make this time anymore bearable.

I was and continue to be tormented by the fact I was told our
baby was fine by a senior midwife, despite having a gut feeling something wasn’t
right. I took her guidance to go home without pursuing further tests and I will
never know if I could have saved her.

Knowing you didn’t advocate for your child when they had no voice
of their own is gut wrenchingly hard and something I have to learn to live with
for the rest of my life.

I’m sharing the findings to empower anyone attending a maternity
ward with concerns for their unborn baby.

• The panel felt that an obstetric review and plan prior discharge
  would have been appropriate and reassuring for the family.
• The panel discussed that there was a
  missed opportunity to escalate to the consultant on call for the labour ward.
• There were human
  factors which influenced the care the mother
  received during her admission.  It was acknowledged that the
  acuity was high on the labour ward and that the coordinator
  was required to care for LB, therefore she was not able to maintain her
  supernumerary role and had other pressures. 

Know that while many midwives are doing their best on busy
wards – particularly during this time of covid they are just people. They can
make mistakes and miss things. If any part of you feels like something isn’t
right, request a consultant, Registrar or second mid wife opinion.  You are entitled to a second opinion if you
feel one is needed.

The midwife who saw to me was senior but she didn’t
routinely deal with “hands on” cases such as mine. She wasn’t trained on the
latest touch screen function of the CTG machine. She wasn’t able to have the
registrar speak with me as they weren’t on the ward having been upset by
another patient at the time.

• The guideline states that if a scan has been
  completed within 2 weeks of the attendance for reduced fetal movements, no
  further scan need be requested at that time.

Whilst we don’t know if a scan would have picked up on a knot
due to the natural coiling of the cord – I will continue to question why a scan
with a doppler to check blood flow wasn’t done when I hadn’t felt Otterley
move. Know your babies kicks and movements, 2 weeks is a long time and things
can change quickly. Push for a scan for your own reassurance if you are
worried.

• The panel discussed the difference between
  attendance with reduced fetal movements and no fetal movements as seen on the
  first CTG recording.  The pathway for
  reduced fetal movements is well-established and frequently used by
  midwives.  However the panel discussed
  adding a trigger for no fetal movements and discussed that sometimes no
  movements are felt by the mother, but can be detected during palpation or
  recorded on the CTG. There is no documentation that the midwife felt movements
  on palpation and none were recorded on the CTG. 
  The first recording for 60 mins without meeting Dawes Redman criteria
  and no fetal movements felt during admission should have triggered a senior
  review and plan for further monitoring before the mother went home.

I felt in our case there was an overly heavy reliance on a
machine. If you go in for reduced movements, your babies heart will be
monitored using a CTG machine which uses the Dawes Redman criteria. If your
babies health doesn’t meet the criteria after a certain amount of time it will
trigger a fail. Know that this isn’t normal and request someone talks you through
the results so you understand why it has failed.

• The panel recommend that the latest trust
  guideline for fetal monitoring is followed, with senior doctor review for mothers whose CTG does not
  meet Dawes Redman after 60 minute. The panel recommended that the pathway is
  strengthened to highlight the risk to babies for mothers reporting no fetal
  movements versus decreased fetal movements. This will be audited by the fetal well-being midwives.

The purpose of sharing this isn’t to direct anger at already stretched
midwives but I refuse to let Otterley’s death hold no value, and can only hope sharing
what we have learned will prevent a missed opportunity to save another baby.