This is me. A three course meal.

*Please note the content of the dessert might make you feel a bit icky. But I you hope think it’s worth a read and a share.

Today’s blog is a bit of a hotch potch. I had to look that one up. Apparently it literally means ‘confused mixture’. Sounds good doesn’t it. Hotch potch. Miranda Hart would be proud.

Or this blog could be described as a three course meal. For starters some rambling on that age-old question ‘How are you?’ The main course is about my ante-natal care. I hope it will encourage pregnant ‘low risk’ ladies to think a bit more about risk management. Dessert will be the story of Yaeli’s birth; a series of ridiculous comments and mishaps. Whilst it ended in me giving birth whilst taking little pain relief, of which I am forever proud, it was not at all what I asked for. The type of thing that happened to me should not be allowed to happen to anyone; whether they’ve lost a baby or not.

So for Starters; it’s always such a difficult question to answer. How are you? I naively thought that after a few months I would start to feel ‘better’, move forward. Feel differently. It just doesn't work like that. Though my Counsellor says I’m doing just fine. Some days are manageable and others are less manageable and others are horrendous. None are ‘up’. So when people ask how I am, I don’t know why Ben and I have answered with ‘there are ups and downs.’ It’s just an easy answer. Instead I should say ‘today I am feeling XYZ’. But it’s four months on and I already feel like my friends and family don’t want to hear me say ‘today I’m feeling shit’. Even though they say they are fine with my honesty. But maybe it’s really me that doesn’t want to hear it anymore. I want to feel happier. Well, sorry me. It’s not always possible.

What are the reasons for these supposed ‘ups and downs’ then?

For one, what is my purpose now? I don’t feel ready to go back to work (even though ‘going back’ to work no longer means ‘going back’ anywhere) So sometimes I feel like I have no purpose. I can’t say my work is the thing that gives me my purpose. But working for the National Lottery Community Fund does have meaning. And it’s something to do isn’t it. But now I don’t feel motivated to work and I don’t have Yaeli to give me my expected purpose. So what is my purpose? Answers on a post card please. Miranda Hart says our purpose is just to Love. I decided maybe it’s as simple as doing at least one good thing a day. Think of someone else. Make one person smile; even it’s Ben. Push for greater awareness of still birth and its impacts. Support pregnant ladies. Raise money.

Secondly. Celebrating the birth of other babies, anniversaries and special dates. Recently two of my closest friends had their babies. I wanted so much to buy them gifts and see them on zoom and celebrate. But I just couldn’t do it. My best friend had a baby girl. I want to learn to see her baby as an individual and be an honorary auntie in the same way as I am to all my other friends’ kids. I know I will eventually be able to manage it. But I also know that every time I see her I will forever think of Yaeli who is supposed to be her age and her best friend. It’s cruel what loss has done to both me and my friend.

On Monday 8th June it was the anniversary of finding out I was pregnant. And on that same wonderful day last year my beautiful niece was born in Israel. It pains me that I will forever look at my niece and know she should have her little cousin Yaeli just nine months behind her in age. I’m finally starting to see my niece on zoom, now she is walking it’s a bit easier, because she is not a newborn. I want to eventually gain a similar special relationship with her that I have with my other two nieces.

But this year the 8th took me to a dark place. I was standing at the top of the stairs the other day and I fleetingly considered throwing myself down them. For even thinking it for less than a second, the amount of guilt I have is terrible. I would never do that to Ben. He is the love and light of my life. But some days it’s feels like Yaeli died just yesterday. Not a day goes by without me thinking about her and for much of the time. I’ve completed the couch to 5km’s now and I’m continuing to decorate the house and I’m going to try and get more into gardening. I’m trying not to dwell and some days I am mostly OK. But I suppose I naively imagined that after a few months I might feel different every day, more positive. I don’t know why I thought that. Sometimes I seem to be longing for Yaeli even more. And wishing for her sibling.

On the advice of my counsellor, I’m going to start to plot the days in terms of the extent of how manageable they are. Then I will be able to look and see if there any patterns over the month and particular causes for really down days. I know that with grief sometimes it’s just random. But it might also mean I see a slow curve upwards over a long period.

Thirdly. Longing. I looked at the videos of me singing to Yaeli and changing her in the hospital. It made me so sad to see myself in so much pain. It’s like it was happening to someone else. But I also felt it all over again. That day I felt able to look at it though. I know some people would question whether I should look at those videos. But I’m thinking about Yaeli anyway so I don’t see the difference. Two lovely women took the time to visit Yaeli after we’d said goodbye to her. They took foot and hand cast imprints for us. When we received them it sent me into momentary floods of tears. Every crease and wrinkle is accounted for and even her gorgeous little fingernails. Yes, it’s sad; but it’s also so comforting. It’s another cause that I hope we’ll soon be able to support - to enable them to raise awareness of their service and enable more families to benefit.

Once I’ve put some shelves up in our lounge, these casts will be prominent, along with some other things to keep Yaeli’s presence in our home. Some people may feel may uncomfortable when they come over to our house. Perhaps they ‘won’t know where to look’ (post-covid restrictions of course!). But Yaeli will always be our baby. And if we had a baby at home, we would have photos and keepsakes. So why is it so different? Yes when you first see it, it may be sad. But if I didn’t have those things around me, would I not feel sad? I know that eventually I will learn to carry the pain with me and I want my baby to be recognised. Always.

And so now there’s the longing for Yaeli, coupled with wanting her sibling to come as soon as possible. I can’t speak for everyone. But I do have some sense of the gruelling nature of the ovulation cycle for women who have been trying for a baby for a long time, have suffered multiple miscarriages, had a stillbirth or are going through IVF.

First it’s the PMT. But of course at this point I’m still holding out that hope that there’s no period coming. Maybe it’s just implantation pain. Just kidding myself. Then sometimes the period is late or there’s a bit of spotting. Woopee could it be implantation bleeding?…Only for my hopes to dashed again when I decide to take a pregnancy test. Then I get my period. And there’s nothing worse than seeing loads of blood and having a stomach ache when all you want is to be pregnant. And of course then comes those few days when you might be ovulating. The only other time of hope you have, other than waiting for your period. But the ovulation sticks are just laughing at you when they never seem to show that joyous dark line of LH surge. So of course; you just do the deed anyway. Just in case. (Sorry, I mean ‘make love’). And then there’s that bloody agonising wait for the period. Again.

Fourth; it’s the happy seconds. It was just a few days before lockdown started in March. We ventured out to Dunelm to buy some cushions. There were so many colours and patterns. We spent ages putting an ochre selection together. Suddenly when we found the perfect selection I felt a bit excited. Then I burst into tears. It’s now June and our garden is looking pretty. We recently planted shrubs and flowers. We only moved into our first house together in October last year and we’ve recently discovered a strawberry and a raspberry bush. I got a little bit of excitement from this. And again burst into tears. I did the same when we went on a socially distanced Black Lives Matter protest. I know Yaeli would have only been nearly four months old but I couldn’t wait to teach her about equality and fairness. My tears don’t always come from guilt at feeling some joy. It’s my longing to share those moments with Yaeli in person, not just in our hearts and in the butterflies.

Now we’re heading onto main course.

In November 2015, the Secretary of State for Health announced a national ambition to halve the rates of stillbirths, neonatal and maternal deaths and intrapartum brain injuries by 2030, with a 20% reduction by 2020.The 2017 ONS report shows a fall in stillbirth rates in England to 4.1 per thousand. The fall in the stillbirth rate represents an 18% reduction since 2010, resulting in 827 fewer stillbirths in 2017 compared to 2010. While this is all good, there are still too many avoidable deaths. Further changes are required to achieve a 50% to reduction by 2025.

I had the same community midwife all the way through my pregnancy and she is a genuinely lovely woman. I had a rapport with her. She cared about me as a whole person; and my mental health. I thought it was good to have that level of continuity of care. I don’t blame her exactly for not spotting any issues. I blame the system she is working within.

I couldn’t believe it when I emailed the Chief Executive of Tommy’s; Jane Brewin; with A LOT of questions and she took the time to arrange a phone call with me that same day. We spoke for at least half an hour. I asked her what she thought of NHS care for pregnant women who are deemed 'low risk'. Her words were both comforting (in that I was asking sensible questions), yet heartbreaking.

She said not a single stillbirth is ‘inevitable’. She explained that the placenta is the life source for all babies and when a placenta isn’t working properly a baby takes all it can from it to sustain its organs. In turn, their growth is stunted. When that baby can no longer nurture their organs, they die. When I told her Yaeli was 5lb3 at birth. She said ‘clearly she was stunted’.

Funnily enough though, our post mortem results told us Yaeli was an ‘infant of a size compatible with dates’ and ‘there was no evidence that she had been chronically starved of nutrition and there was no growth restriction’. I’m guessing in medical terms Yaeli wasn’t ‘stunted’. But small babies can only be small because of something to do with growth, which is impacted by the placenta. On examination of the placenta they did find extensive inflammation and the condition known as villitis of unknown aetiology. This condition is present in about 15% of all pregnancies and its cause is unknown. Whilst it is not a cause of stillbirth, it has been associated with pregnancy loss and growth restriction, as well as other complications. In some ways I am pleased to have been told there was a potential issue. Now I have the power to investigate and ask questions about how to look out for this and / or manage it in a future pregnancy. They also found that my free thyroxine level was slightly low. I think thyroid changes are quite common in pregnancy and are unlikely to have contributed to the stillbirth, but again I now have questions to ask about this.

Jane Brewin from Tommy’s told me that first pregnancies are the highest risk. But risk assessment in pregnancy for women deemed to be ‘low risk’ happens once. At the booking in appointment at 6-8 weeks. Risk is not re-assessed. Jane says it should be. I was correctly deemed to be low risk at my first antenatal check. However, it became clear that our baby was measuring small. I genuinely feel that it was assumed all was ok because I am only 5ft 1 inch and I wouldn’t be expected to have a large baby. But just because you are small, doesn’t mean your baby should be or will be small too.

In ‘low risk’ women like me who were not undergoing serial ultrasound scans that look at foetal growth, assessment is performed using antenatal height charts. They use a tape measure to measure your bump. They plot the growth and refer for a scan if the measurement hasn’t increased at the next appointment. But measuring a baby’s growth in this way is imprecise and inconsistent. At every appointment with my midwife, she struggled to accurately measure my bump and admitted she found it difficult to measure. She would always get a different reading to the student midwife. Even if the reading is correct, it’s not an accurate picture of growth because on any given day a baby can be curled up or stretched out – it’s simply a snapshot. I hated being measured. I thought it was bullshit. But I didn’t demand scans. I didn’t really understand the risks. There’s that regret again.

At 34 weeks I was referred for a growth scan because the reading had not gone up between appointments. At 34 weeks we were told the baby was measuring about 4lbs. It was estimated the baby would be 7lbs at full term. I was not sent for any further scans until my due date. On my due date I was referred for a scan but at that stage it was unlikely I would have it before delivery – and again I heard ‘I’m not worried’.

Given that it Yaeli was born weighing 5lbs3; something went very wrong between 34 and 40 weeks. Clearly it would have been helpful if I had been sent for further scans so precise growth comparisons could be made. If they had detected a lack of growth post 34 weeks, perhaps they would have advised inducing me before 40 weeks. In any future pregnancies I have been told I will be induced at 37-38 weeks.

If there is a next time, I will now be offered the world. Early scans, growth scans, early induction, support. The lot. Antenatal care in England gets better only AFTER something has gone wrong.

Now that you’ve eaten main course and you are full. Do Pause.

If your baby is measuring small ask for regular scans. And if you don’t trust the tape measure – call it out. Please share.

So now it’s time for dessert, albeit a bit of a (st)icky one.

So I’ll start by telling you what the NHS Saving Babies Lives says (March 2019).

‘Maternity staff know that providing great care is about good communication, choice and personalisation, not simply meeting targets. Women should be able to make decisions about their care during pregnancy, during birth and after their baby’s birth, through an ongoing dialogue with professionals that empowers them. They should feel supported to make well informed decisions through a relationship of mutual trust and respect with health professionals, and their choices should be acted upon. It is self-evident that a woman’s autonomy is paramount and that care should be delivered in a way which informs and empowers’.

As soon as we found our baby had gone, the midwives at the hospital were all amazingly caring, supportive and friendly. Nothing was too much. It was like being a royal (obviously I can only imagine). I had a girl crush on one of the midwives in particular. She was so lovely and her manner was so calming. So after a long night in which my parents, Ben and I spent most of the night talking or crying, the next day Friday 14th February 2020, a team including an obstetrician and our bereavement midwife sat down with us to talk about my options for giving birth.

I'd never really though about what happens when a baby dies before birth. I couldn't really comprehend that I would actually need to give birth, knowing the baby could not come home with us. I kept thinking there must be another way. I kept saying 'I can' t do it'. I was so scared. I'd never been so terrified.

I made it really clear to the team that I was petrified. And that as I’d found out our baby had died and the emotional pain was indescribable, I did not want to experience physical pain during the birth, as per my original birth plan. I was assured that I would be able to have an epidural as soon as I had a few contractions, and that appropriate pain relief would be offered prior to this.

We did discuss the possibility of a caesarean section. I was advised that I would be recovering physically for a lot longer if I had a caesarean section and that this, coupled with the mental challenges of losing my baby, may mean I might find the aftermath of a caesarean section more difficult to recover from. On this advice, I opted for an epidural and a vaginal delivery.

That afternoon I was given oral pills to start labour. It took me a while to pluck up the courage to swallow them, knowing that once I did, there was no turning back and a stillborn baby would be born, sooner or later.

Nothing much happened for the rest of that day. On Saturday 15th at around 2pm I was fitted with a canular in my hand to enable the team to give me diamorphine (I think it was) to self administer every five minutes during labour. The midwife on duty inspected my dilation. She was the same midwife with me for the next few hours.

I was told I was ‘two finger tips’ dilated, which is basically nothing. Then at approx 3pm or 4pm I was given a vaginal pill for the purposes of speeding up the induction. I won’t go into details in case you’re actually eating; but let’s just say about half an hour later it was clear that the vaginal pill had started to do some magic. So I had a shower and then we went for a walk around the hospital car park. At this point I started having stomach cramps so I self administered the drugs about two or three times whilst I was outside. The canular only allows you to do administer it every five minutes.

When I got back from the walk I told the midwife on duty that I was having cramps and I didn’t feel that the drugs were helping with the pain. She said my cramps were probably trapped wind. She advised me to use the drugs every five minutes for the next hour so its effect could build up. At this point we asked if it was possible to have the epidural. I’d been told I could have it as soon as I had a few contractions. The midwife on duty again said it was probably just trapped wind. She said ‘technically yes’ I could have an epidural but it would slow down the labour. She thought it was unlikely I would give birth that evening.

I listened to her.

I believe it was at this point that the midwife asked me why I had decided not to have a caesarean section; which I was originally considering the previous day; before being offered medical advice. I thought this was a really strange and actually quite upsetting question, considering I was now going to have a vaginal delivery and labour. I felt that she was judging my decision to have a vaginal birth. I asked her ‘why are you asking? Should I have had a caesarean? She said ‘I was just wondering as you said you didn’t want any pain’. This then made me believe I had been mislead the previous day when I was told that I would not need to encounter a lot of pain before an epidural would be given.

I continued to use the drugs and ended up feeling totally drunk. But still in pain. At some point after this when we called the midwife back and asked for an epidural. Again she said I might have trapped wind and probably needed a poo. I remember her telling me I wasn’t experiencing contractions. She said contractions begin from the upper part of the stomach, underneath the breasts and tend to move downwards. At some point that evening I clearly remember saying to her with a raised voice that ‘If I needed a poo this badly at home, I would call an ambulance’.

I think this may have been the point that the midwife went to find an anaesthetist. But she came back and said they were busy in theatre. I don’t know how many times we asked for an epidural after that (but it was several) but I remember the midwife saying she was trying. At one point she came in and she started crying and hugging me, saying she was sorry I was going through this.

At some point in the evening, around 8pm I think, another midwife came on duty. I remember asking her where the other midwife had gone. She said she had gone off her shift. She never said goodbye to me.

Finally at some point an anaesthetist arrived to administer an epidural.

I was never vaginally examined to check my dilation.

The new midwife and Ben were holding my arms to stop me from moving. I was screaming so much. There was hardly any gap between contractions. The anaesthetist had to try twice to get the epidural in, shooting pains all down my legs.

Exactly as he finished administering the epidural, and he was still in the room, I really did need a poo. I shouted that I had to do it. I couldn’t stop it.

I wore an eye mask to try to keep me calm. I touched the bedsheets and I couldn't feel any faeces. So I felt between my legs.

It was Yaeli’s head.

But I'd been led to believe I must still be in the early stages of labour.

I projectile vomited; twice. Ben caught it in his hands apparently.

The new midwife took control at this point and was great. Yaeli was born soon afterwards just before 9pm. I suffered a short manic episode once I’d given birth.

Despite being told I needed a poo throughout my labour, I never did one.

A catalogue of inappropriate comments and actions during that shift, led to an extremely traumatic birth experience. One totally opposite to what I’d been promised. And during the delivery, I wasn’t listened to at all.

There is now a Serious Incident Investigation review being undertaken into my antenatal care and my time in the hospital. All I want is to make sure that nothing like this is allowed to happen to anyone else.

I summarised my issues to the reviewers as follows;

1. The midwife asked me why I didn’t have a Caesarean.

I found this strange and offensive.

2. The midwife was unable to locate an anaesthetist.

After the birth the same team that we’d seen prior to the induction apologised to us. They told us that in priority cases like ours and in a large hospital like the one in which I gave birth, an anaesthetist could always be found.

3. The midwife kept telling me I had trapped wind.

I now know I was having contractions. Presumably different women present in labour in different ways. That midwife requires some basic training.

4. The midwife cried.

Did she feel overwhelmed? Did she not have sufficient experience? Had she a personal experience that was triggered? Was she traumatised or did she just assume I was not going to give birth that evening? Did she have sufficient support? For her sake and for the sake of other women, this needs exploring.

5. The midwife disappeared for ages and left without saying goodbye.

I felt abandoned and that this was unprofessional.

6. I was not examined before being given an epidural.

Obviously I was fully dilated when it was administered. This made it almost impossible to administer; took two attempts and it had no time to have any impact at all. It felt dangerous to administer at that point.

7. I was repeatedly told I wasn’t having contractions. It was assumed the labour was going to take hours more. As a result I was totally shocked and traumatised when I felt the baby’s head. I believe that’s why I vomited and had a strange episode after giving birth.

Rather than enjoying skin to skin with Yaeli, I felt like I was going mad when she was put in my arms. I’m sad that I lost the opportunity to have precious moments with her skin to skin - although perhaps the drugs and the whole situation caused this. I don’t know. At least I'm lucky to have had precious time with Yaeli the following two days.

I do apologise if dessert has put you off your next meal. It wasn’t my intention.

I just wanted to highlight again that;

‘Women should be able to make decisions about their care during pregnancy, during birth and after their baby’s birth, through an ongoing dialogue with professionals that empowers them. They should feel supported to make well informed decisions through a relationship of mutual trust and respect with health professionals, and their choices should be acted upon’.

It definitely doesn’t matter if you have lost a baby or not. Just as they teach you in hypnobirthing classes; it’s about the importance of empowerment. Know what you want; be flexible (as it doesn’t always go to plan); but be assertive! All pregnant women have the right to be heard. So many women are not.

Enough said.