Flashbacks

One of the hardest things for me to deal with at the moment are the flashbacks I seem to be getting. I can’t control them and they are never the nicer memories… ‘It doesn’t look good guys’ is what the doctor said when he told us the news, ‘what will she look like’ I asked a different doctor, to which she replied ‘she will look like a baby’… this last one has stuck with me, because although comforting at the time, she will not LOOK LIKE a baby… she WAS a baby… MY baby!!! She was loved, wanted and cherished and she always will be! I will always have a piece of my heart missing, and it will never be complete again. I understand that now… I don’t like it and I can’t accept it… but I do understand it.

One of the biggest flashbacks I’m getting is of Sophie being wrapped in a towel and me being taken to theatre to remove my retained placenta; when I got back from theatre Sophie was bathed and dressed. I asked Paul if he had washed and dressed her, and he said ‘no the midwife did it’… this I accepted at the time (I had just given birth to a stillborn daughter and didn’t want to make a scene!), but it has affected me… really affected me! I can visualise every single part of Sophie, except her feet! I never saw her feet so I have no idea what they looked like! I should have bathed her, I should have washed her, and I should have told the midwife not to do it… but I didn’t, and now I never will be able to… and that crushes my heart sometimes.

The flashbacks are so hard, I had a dream 2 nights ago that I gave birth and the doctors were wrong and Sophie was alive… then I woke up and cried! I have had dreams where I’m in labour and Sophie is born with a smile on her face, waving as she flies into the air to be with the other angel baby’s… and I just try to pull her back. Dreams can be very upsetting sometimes.

 If you are experiencing flashbacks then please write a comment.

 

The Hardest Thing

I often help mums who are going through loss and talk to them before, during and after the birth of their sleeping baby, I never tell their stories because whatever they say to me is confidential, and I have too much respect for them to break that confidence! However, one loss mum has specifically asked me to share her story. I was contacted last week via Facebook messenger by Amanda who had just been told that her baby had passed away at 37 weeks… she went for a routine check-up with her midwife, and when they tried to listen with the doppler there was only silence; that is something that I remember… the silence! No heartbeat, no movements and no sounds from the blood rushing through the placenta… just silence. She had felt her son move the night before, but hadn’t felt him that morning; she wasn’t concerned though as he was always quieter in the mornings; this is how her story began, the next chapter in her life, the one where she would have to find a new path without her precious son Daniel.

She was given my details from someone on the ‘Our Angel Sophie’ Facebook page, this person would like to remain anonymous but I would just like to say thank you for suggesting that she contacts me. I always feel very honoured when I’m contacted by people who are going through this, people looking for support, and people looking for a friendly person to help them through it. It’s a very private and sensitive time, but it can also be very lonely, and the fact that I am occasionally contacted to help with support and ideas makes me feel very privileged.

So, Amanda messaged me and explained that she had just got back from the hospital and that they were going to induce her within 48 hours (this seems to happen a lot, they send you home and bring you back 2 days later). She was obviously very scared., upset, worried and angry; it was better to talk rather than message so I called her via the messenger app. We chatted for a long time about her pregnancy, her feelings and what would be likely to happen when she goes in to be induced. We also spoke about making memories, the help in place for after Daniel’s birth and the support that her family have at home. I made suggestions where I could, but I mostly listened.

We kept in touch over the next two days, speaking regularly as she set about packing a bag for the hospital and organising childcare for her other 2 children; while I helped by organising a photographer for her. It is always heart-breaking when I am helping other loss mums… that agony is something that I wouldn’t wish on anyone! But I feel privileged that people trust me enough to let me offer support; as I’ve said before, it’s a very frightening and lonely time, and just having someone to talk to can be really helpful.

I kept InTouch with Amanda via message on the day that Daniel was born, I thought it best to leave her and her husband alone so that they could just ‘be together’. I did say she could ring me any time and left it at that… although she was never far from my mind! She phoned at 11pm to let me know that he had been born and how perfect he was. She sent me photos of her sweet angel and Daniel was absolutely gorgeous.

Amanda went home the next day and she phoned me to thank me… when it should be me thanking her! It is such an honour to help someone through such a devastating time. Amanda has asked me to share her story with you.

I keep in touch with her and I think I always will.

Bereavement Midwives – Experiences and Opinions

My own experience with the hospital bereavement midwife wasn’t a very positive one and I wanted to discover whether more can be done to ensure that people are more supported by the bereavement midwives after they leave the hospital. I went about asking for experiences and opinions from other loss parents; and to be honest it is completely mixed! Some had amazing support, while others had awful, or non-existent support!

My Experience

After we lost Sophie we were assigned a bereavement midwife by the hospital; she wasn’t working the day that Sophie was born and therefore we didn’t meet her before the birth; however, we were induced two days after we were told that Sophie had died so she really could have made contact during that time to offer support and explain what would happen… it’s a very scary time and that would have been helpful! She was working the day after Sophie was born, but she still didn’t come to the bereavement suite to meet us before we left as she was ‘really busy’, so the hospital chaplain came in her place.

In fact the first time I spoke to her was the day after we got home when I wanted to go back to the hospital to see Sophie before she went for her post mortem; I telephoned her number and left a message for her to call back… which she did and then she met me at the hospital. The first time I met her she seemed pleasant, she asked how we were coping and if there’s anything we need help with. I asked for a referral to bereavement counselling for my son (I am still waiting for her to do this and ended up going through my GP!). After I visited Sophie she explained about how long the post mortem would take etc, and said that she would keep in contact to see how we were; and to please phone if I need to talk to someone as that’s what she’s there for.

I did telephone a few times (always got the answering machine!), and it always took 24 – 48 hours to receive a call back, and then she was nice on the phone but didn’t action anything she said she was going to!, she has never once visited me or invited me to any appointments, she did not attend Sophie’s funeral and she has not acknowledged Sophie since… I have heard from some people who, for instance, received a letter or a ‘thinking of you’ card on their baby’s birthday… we didn’t even get a phone call! I personally think she’s in the wrong job!

Experiences by others

I asked members of the Sophie’s Angels support group for their experiences and opinions, and the comments were completely mixed! Some positive and some negative. I thought this would give an idea as to what more can be done to support families who have lost a baby.

Positive

I’m always pleased to hear positive experiences about bereavement support… these are some of the comments that were made:

‘So far… AMAZING. I had a side room and the same 2 lovely nurses who looked after me from being admitted to being discharged. Nothing was too much trouble, pain was well managed. Small acts of kindness like letting my husband come/go and stay as much as I/he wanted without restricting us to visiting hours. Giving him a pass to the car park so we didn’t rock up a huge parking debt. They fed my husband and brought him cups of tea/coffee. The way they were with Dexter, how they dressed him and complemented him, the gorgeous memory box and ‘birth certificate’ (not an official one as he was born at 20 weeks), the way they brought him to me as many times as I wanted, the pass they gave me to come back to the ward to come and see him as much as I liked after I was discharged. The photographer they got to come and take pictures of the 3 of us, the chaplain they arranged to come and see us, the bereavement midwife who came to see us… if it’s possible to have a ‘positive’ experience whilst going through this I certainly did’

‘My son died at the children’s hospital where they had a group of people specialist in bereavement. They took hand and prints as well as a foot cast of my son, gave us a box with a candle, an angel, seeds to plant a flower, a box to put some of his hair in. The phoned every so often to check on us and they were wonderful’

‘I could write so much about all of the amazing care I received especially my amazing bereavement midwife Nikki. She was my rock when we lost Amelia last year. This time when we lost Sophia in June The care at the hospital was fantastic again. We were in the snowdrop suite again which is nice, my husband never had to leave they set up a bed so we could sleep together. They gave us our beautiful memory box and took hand and footprints for us. Nikki the bereavement midwife came straight up to the snowdrop suite to see me when she heard I was back. I could tell you so many things she’s done for me. She has gone above and beyond. Today she came to visit me and she knew I wanted to go back to the hospital to hold my baby as I didn’t have chance when she was born. My husband didn’t want to see her again and as she didn’t want me to go alone she took me. Sat with me when I cried and hugged me when I needed it the most. She then took me for a hot chocolate and a chat’

Negative

Unfortunately there are also many negative experiences, and more can most definitely be done to help with bereavement support; either before, during, or after the birth:

‘My experience wasn’t so good I was on labour ward for a whole week and I wasn’t allowed in the quiet room till the last night. The midwife’s where lovely, gave me a memory box hand and foot print had a cold cot were really respectful of him asked his name etc and talked to him which was comforting. I can’t fault the midwives, they gave me a lot of emotional support while I was in the labour wars for 7 days hearing births; another lady came in during that time at 39 weeks to deliver a stillborn baby which was heart-breaking all the more. I was given some leaflets and that was it when I was discharged, SANDS send me a letter to attend a candle lighting event every 6 months, but that’s all aftercare I have received’

‘My bereavement care was so poor. The whole care from admission to discharge was disgusting actually. Felt really let down and totally robbed of all the things, the little memories I never got to do that I will never get back. They only had 1 bereavement midwife for the hospital, and whilst she was off the week I was admitted no one stepped in and took her place to guide me and my partner through the process of it all. I had a different midwife and Dr every day and night literally no continuity of care what so ever. The memory box was left outside the room, they all avoided the room like the plague avoided all the questions I had. The midwife who delivered my angel was nice but she didn’t do the care to her full potential, she covered my baby with a towel as if she was a bit of trash, I was totally rushed with my baby, I was given 8 hours with her which I will forever treasure, but I was kept in that night and my baby sent to the mortuary even though they had a cold cot there. Also I wasn’t offered to see my baby again by the hospital, the bereavement midwife txt me and called me when she got back off holiday and explained that the staff hadn’t given me a bereavement info pack that I should’ve got which I later got posted out to me. Also I had to figure a lot of things out on my own. The staff were all so under trained with bereavement care (and I wasn’t even a difficult patient). I was 37 weeks pregnant when I had my little girl who was born sleeping, with no complications what so ever and no cause of death from a full post mortem’

‘I never had one. Wasn’t even offered one. I’ve just struggled through on my own’

‘My care was horrific! My bereavement midwife was none existent. Counselling was a great help but wasn’t offered until 12 weeks after, and by that time I had already attempted suicide! Nothing got explained, because of this we missed out on a lot of memory making’

‘Mine was terrible. I lost my daughter on the 8th April at 17+2 and I’m still trying to get help. I have taken an overdose too. I was assigned a bereavement midwife but only spoke to her once and that was to tell me Elsie had had her post mortem. I’m still waiting for the results. The care I received whilst suffering my miscarriage was on another level of shocking. I’ll never go back to the hospital concerned if I’m ever lucky enough to have my rainbow’

Conclusion

As far as I can see there are some bereavement midwives who go above and beyond to really support the families, while others could do with retraining so that people feel supported and cared for. Small gestures make all the difference… phoning or visiting to see how you are, offering help and support, referring to outside agencies who may be of benefit, attending the funeral, becoming a friend, being approachable and easy to talk to, returning telephone calls, visiting before the birth, organising the birth photographer, hand and foot prints etc, offering to help with any arrangements, recommending funeral directors… there are many things that can be done to help the grieving family and as a bereavement midwife or support worker they really should be doing everything that they can to make this difficult time slightly easier.

Please feel free to join Sophie’s Angels, it can really help to connect with other parents who are going through loss.

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Stillbirth Rates in the UK

Before we lost Sophie, we thought, like most families, that stillbirth was very rare. We naively imagined that once we’d hit 12 weeks then we could tell everybody our happy news, we had a miscarriage at 10 weeks the year before and there I was focussed solely on that 12-week scan; the scan showed a perfectly healthy baby which allowed me the freedom to think that the rest of the pregnancy would be easier and I’d be bringing a healthy baby home.

It is only since losing my daughter that I have discovered the dark, unspoken truth about the stillbirth rates in the UK, and it is certainly not as rare as I once thought! The NHS states that ‘there are more than 3,600 stillbirths every year in the UK, and one in every 200 births ends in a stillbirth’ that means that 11 babies are stillborn every single day, and many of these are thought to be preventable. The UK has one of the worst stillbirth rates in the developed world; and in Europe only France and Austria have more stillbirths per year.

An obstetrician, Professor Kypros Nicolaides has said that ‘offering all women Doppler scans, which measure blood flow between the placenta and foetus, could save over 1,500 babies a year’. Placental failure is often a cause of stillbirth as reduced blood flow through the placenta can starve the baby of food and oxygen. This mostly occurs towards the end of pregnancy, but, if identified, the baby can be monitored carefully and delivered by Caesarean section before the placenta fails. Placental failure can be spotted with regular doppler scans. Prof Nicolaides was the scientist and obstetrician who developed the 12-week Down’s Syndrome scan, still given to every pregnant woman in the UK. He has been researching Doppler scans for 15 years and believes extending the programme across the UK could cut the stillbirth rate by as much as 50% – potentially over 1,500 babies a year.

HQIP (Health Quality Improvement Partnership) commissioned a report as part of the Maternal, Newborn and Infant Clinical Outcome Review Programme in November 2015, based on findings by MBRRACE-UK (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK), which stated that up to 60% of stillbirth cases could be prevented; and improvements in care were identified which may have made a difference to the outcome of stillbirth. The study also found that half of stillbirths occurred after women contacted maternity units due to changes in baby’s movements; and in almost all of these cases maternity units failed to correctly investigate the warnings. You can view the report by clicking here.

Prof Jason Gardosi, director of the Perinatal Institute in Birmingham, set up the Growth Assisted Protocol (GAP), the GAP works by giving each mother a customised growth chart developed using her height, weight at beginning of pregnancy, ethnic origin and how many children she has had; It estimates the weekly size of the baby based on the GAP and if the baby’s growth falls outside the expected “norm” for that individual woman, the mother is given extra scans to check that the baby is thriving. This only costs 50p per pregnancy.

“There is a common misperception that many of the deaths are inevitable, but our research shows most stillbirths are preventable. These babies should not be born in silence, their parents should not be grieving in silence, and the international community must break the silence as they have done for maternal and child deaths. The message is loud and clear – shockingly slow progress on stillbirths is unacceptable.” – Professor Joy Lawn, London School of Hygiene & Tropical Medicine, speaking to Sky News

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