An Open Letter to a Grieving Mum

I am so deeply sorry that you find yourself in this awful and devastating situation, I wish I could take your pain away and make everything ok again. I know that right now you have more questions than answers, and I am hoping that one day, you will find the answers that you seek. I know that you probably feel numb, angry and upset, and I also know that you feel you will never be able to accept what has happened… how could you? How could you possibly accept that your baby will not be coming home? How could you ever accept that you had to leave your baby with strangers, cold and alone, while you returned home to an empty house, and a nursery full of things that your baby should be using?

I want you to know, even though you feel like it, you are not alone. I want you to know that you and your baby matter, and I need you to know that there are people who you can talk to, other people who have been through the same, devastating and life changing thing… because losing a child is life changing, and no matter what others might say, things will never be ‘normal’ again… but you will, in time, find a ‘new normal’.

Please share your baby as much as you want; I know that occasionally, as a loss mum, you may receive negative comments when you talk about your baby, or share their photos. These comments may put you off sharing, you may feel like you ‘have to move on’ and not share any more, you may then feel more isolated. When I first started to share Sophie I received comments like this, mostly from people who care a great deal and thought that I was torturing myself, sometimes from people that were just nasty, or didn’t understand. At first, it really upset me, and I stopped sharing Sophie’s story and her photos; but after a short while I realised that sharing her, as much as I share my other children, was helping me and not hindering me! If people don’t want to look then they are welcome to scroll past, and the positive comments certainly outweighed the negative, which made me happy! For the people who do post the odd unhelpful comment, I no longer feel upset or angry; instead, I feel grateful, grateful that they don’t know, and don’t understand, what it’s like to lose a child; because I would never wish this on any one.

Lastly, I want to say, that its ok to not be ok, I say this to people on Sophie’s Angels because it’s true… sometimes breathing IS enough! Sometimes you may not feel like doing anything… that is perfectly ok, housework etc can wait! Taking things one step at a time, taking each minute as it comes… all these things will help you to get through today; and that’s ALL you need to do.

Lots of love and hugs to you, your family, and your precious angel

Maria
xxx

Things to say, and not say, to grieving parents

I asked the members of Sophie’s Angels what things have stuck in their minds, following the loss of their precious children. I wanted this post to be raw, largely unedited, and from a grieving parents perspective. Yes – I can write the things that trigger me, or make me feel better, but as we all grieve differently I wanted a larger input on this. Many things were said to me when I lost Sophie, mostly people meant well, but even people that say things ‘out of love’ don’t realise how hurtful their words can be. I have previously (in July 2017) written a blog post on ‘Things not to say to a loss mum’ which you can read here; but I wanted to write an updated post with the helpful, as well as the not so helpful, comments that parents receive.

Are you ok?

Now this is obviously coming from a caring place, however this can be a real trigger for some! One of the members on my group replied to this comment with ‘of course I’m not ok what a stupid question’ and another member said ‘I used to reply with a curt no’. A better way to ask this question would be ‘How are you feeling?’

Are you going to try for another baby?

A member was asked this 2 days after losing her angel! 1. It is none of your business, 2. It is none of your business and 3. It is still none of your business would be my reply to this!

My midwife walked in for my post labour visit and asked me what I had

‘I thought that was really insensitive considering he was stillborn. She had my notes and they even stated his name so I was quite annoyed by that’, I am so sorry this happened, it shouldn’t happen! I know from my experience that I had to contact the community midwives and explain what had happened to Sophie, because the hospital didn’t let them know that she was stillborn, and therefore the postnatal home visit checks that I was told to expect didn’t happen until I contacted them myself!

It was Gods will/It wasn’t meant to be/Everything happens for a reason

This is really upsetting and triggers a lot of people (including myself), please think before you say this! What possible reason could be good enough for a child to die? How do you know it wasn’t meant to be? Think before you speak!

He’s in a better place

Excuse me… nope, nope, nope!! The best place is ALIVE with a loving mummy and daddy. Do not ever say this… it is not helpful one little bit!

You’re still young, you can try again

And your point is??? Do you really think that plays any bearing on how I feel right now! Another pregnancy won’t replace my son/daughter so what’s the point in even saying this?

Be grateful/lucky that you have the other two

One replied to this comment with exactly what I was thinking! She said ‘I actually started to respond back and which of your kids would you choose to lose as you actually have x amount’. I have had this said to me by well-meaning people a fair amount, these are generally people that don’t (thank goodness) know what it feels like to give birth to a lifeless baby.

He was to pretty for this earth, he will come back as a girl

I actually fail to see how this is in any way helpful!

9 months and your still crying, it will get better

I’m sorry but what time limit would you like to put on my grieving? I lost my child, I will NEVER get over it and I will NEVER forget. One member wrote ‘I hate people that say this. We’ll never ever be over it. It’ll stay with us forever. We just learn to live with the pain and grief. So it gets easier but it’s always there’.

At least you have your daughter Sophia

Just because we already have a child it doesn’t mean our angel was any less Important or loved

One member wrote: ‘I don’t believe there are any truly good things to say but saying nothing and having people avoid you because they don’t want to upset you or don’t know what to say is harder. Are you ok? Seems silly and those that ask it feel silly asking it but they have taken the time to check in with you and to let them know they are thinking about you. I appreciate that every single time. People want to give you comfort there just isn’t anything out there that can. The reality is the way i am feeling there are no words to describe they haven’t been invented yet but i am grateful to my Patrick for being my son and to every single person who has shown me kindness, support and love since losing him (also losing him sounds daft as I didn’t forget where I put him)’

This seems to be mainly a post about what not to say! And there is a reason for this, the hurtful things that have been said (even by well-wishers), stick in your mind far more than the good, helpful things. I will try to list a few here:

  • How are you feeling?
  • Is there anything I can do to help?
  • I’m going to the shops, do you need anything?
  • When you’re ready I’d love to hear more about/see photos of your angel?
  • Do you need any help planning the funeral?
  • What are you planning to have at the funeral?
  • Can I come with you next time you visit your angels forever bed?, I’d love to lay some flowers
  • Would you like me to look after your other children so you can rest?

Above all, allow the grieving parents to speak freely about their angel, offer them a safe, non-judgemental shoulder to lean on; loss parents tend to love talking about their baby, but they can shy away from it because other people feel uncomfortable, by offering them time to talk, show pictures, laugh and cry, you will help them tremendously.

 

Providing Comfort – Bear for an Angel

Bear for an Angel is an amazing organisation which supports grieving families following the loss of their child, no matter what age or gestation. Bear for an Angel was founded by Michelle McGunnagle who has, herself, suffered several losses and you can read her full story here.

Latest figures show that 1 in 4 women suffer miscarriage, missed miscarriage, ectopic or molar pregnancies, and as early losses are often not acknowledged by many hospitals or care providers these families, often in shock, have to go home with empty arms and a broken heart.

Michelle McGunnagle says ‘At Bear for an Angel we believe that every baby is precious and should be remembered, acknowledged and is loved no matter what gestation or age. We provide comfort & acknowledgement to bereaved families affected by the devastation of pregnancy, baby or child loss. We donate ‘Bags of Love’ to Ipswich hospital epau (although we’d like to offer these to more hospitals and funeral directors eventually), and we also offer our ‘no sew’ memory bear packages to bereaved families throughout the UK’.

Bags of Love:

  • A tiny teddy bear
  • A tea light
  • A mini acknowledgement of life
  • A mini quote scroll
  • Our bear poem
  • Butterfly bubbles
  • A tibeton silver charm
  • All inside a organza bag

 

Our Memory Bear Package

  • An 8 inch teddy bear skin
  • A bag of stuffing
  • A wishing star
  • Our Bear for and Angel poem card
  • A tea light or small candle
  • A teddy bear certificate

Bears for an Angel use the slogan ‘Comfort in a Cuddle’, their bears are a cuddly companion to hug, filling empty arms and helping grieving hearts to find comfort while acknowledging the lives of precious babies sadly gone too soon. Another fantastic thing about these bears is that they are ‘no sew’, which means that a sound device containing the baby’s heartbeat, a spoken message from someone, a scent chip, a vibrating heart or a few ashes or keepsake can be added inside.

There is also the chance to help another bereaved family whilst helping the memory of your babies live on through our Give a bear option which is such a wonderful gift to give. Beyond the bear there is our emotional support network via social media which families find invaluable and is run by bereaved parents so we understand what you are going through.

Our Aims are:

  • Provide an emotional support network via our Facebook & Twitter pages to ease the isolation of baby loss.
  • Connect grieving families via our social media pages & give a bear option a wonderful gift to give to another bereaved family.
  • Provide funding towards our no sew bear packages to provide comfort at times of sadness and to make memories in the UK after any loss, up to 21 years.
  • Provide free bags of love to bereaved parents after loss in early pregnancy to provide acknowledgement in the UK.
  • Provide free acknowledgements of life via download for any loss who didn’t receive any birth certificate.
  • Provide free memorial pages in partnership with Much Loved.
  • Raise awareness of pregnancy, baby & child loss by events, flyers and advertising.

Achievements:

  • We have grown to over 11,000 members on our Facebook page and growing
  • We have helped over 600 families receive a package
  • We funded 36 Xmas comfort packages (DEC 2016)
  • We donated 14 bags of love to Ipswich hospitals epau

Michelle is passionate about baby and child loss and wants Bear for an Angel bags of love in every hospital epu, bereavement suites and silent rooms no mother should go home without anything to acknowledge their precious baby.

Please visit Bear for an Angel if you have suffered a loss, or if you can support this amazing organisation in any way. You can visit their website here.

To ensure that this fantastic support continues they need as many supporters as possible to help with fundraising. If you feel you can help in any way, then please click here.

You can also find them on Facebook, or follow them on Twitter

 

 

Antiphospholipid (Hughes) Syndrome

Antiphospholipid syndrome, also known as Hughes Syndrome, is an autoimmune disorder which causes an increased risk of blood clots. People with this condition are at an increased risk of developing:shutterstock_53224042_height-400.jpg

  • Deep vein thrombosis
  • Arterial thrombosis
  • Blood clots in the brain
  • Pregnant women have an increased risk of miscarriage or stillbirth

What causes antiphospholipid syndrome? 

With antiphospholipid syndrome the immune system attacks healthy tissue; abnormal antibodies are produced which target proteins attached to fat molecules, making the blood more likely to clot.

Diagnosing antiphospholipid syndrome

Blood tests are used to diagnose antiphospholipid syndrome; these tests look for antibodies responsible antiphospholipid syndrome.

How antiphospholipid syndrome is treated

Antiphospholipid syndrome cannot be cured; however, it can be managed successfully. Blood thinning injections, such as fragmin can be self-administered and aspirin can also be taken to help thin the blood. These medications can also improve a pregnant woman’s chance of having a successful preEIS05000.jpggnancy.

Pregnancy 

Antiphospholipid syndrome can cause recurrent miscarriage or stillbirth, as well as other pregnancy complications. At least 15% of recurrent miscarriages occur as a result of antiphospholipid syndrome, and with prompt treatment, the pregnancy success rate has risen from 20% before 1990 to over 80% today.

Pregnant ladies are usually treated daily with low dose (75mg) aspirin, and if a previous loss has occurred in the second or third trimesters they may also be given fragmin injections.

Pregnancies can be affected in a number of ways:

Early pregnancy loss

Most miscarriages occur during the first 13 weeks; antiphospholipid antibodies can cause early miscarriages by preventing the embryo from embedding properly in the womb. Early miscarriages are common, and there are many possible causes. Therefore, women will not be tested for antiphospholipid antibodies until they have three consecutive early miscarriages.

Late pregnancy loss

In most pregnancies foetal death in the second and third trimesters is rare; however, it is strongly associated with antiphospholipid syndrome and therefore women with a late pregnancy loss should be tested for antiphospholipid antibodies. Women with antiphospholipid syndrome can develop clots in the placenta or around the cord which reduces the baby’s oxygen supply.

Pre-eclampsia 

Pre-eclampsia is twice as likely to occur in women with antiphospholipid syndrome.

Intrauterine growth restriction 

Intrauterine growth restriction (IUGR) are babies with a very low birthweight and they usually weigh less than 90% of babies at the same gestational age. With antiphospholipid syndrome the reduced blood flow to the placenta can cause the baby to be small for dates.

Research

What is being done to treat Antiphospholipid (Hughes) Syndrome? And what research is in place to find things to help someone with this condition? I recently came across ‘The London Bridge Hospital’ website, they are a private hospital which specialises in treating Lupus and Hughes syndrome as well as conducting clinical research.

From The London Bridge Hospital website ‘In 1983, our group described a condition in which there was an increased tendency to blood clotting. Such clots can occur at any time, and can affect veins or arteries anywhere in the body. During pregnancy, clotting of the placenta results in a tendency to miscarriage – some women suffering a dozen or more miscarriages before correct diagnosis and treatment. Features include leg and arm clots (DVTs), headache and migraine (leading in some to stroke), memory loss, chest pain, cold circulation. We initially reported the condition in a group of lupus patients but soon recognised that it could occur in individuals without any evidence of lupus’

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Clinical Studies for Antiphospholipid (Hughes) Syndrome Research

Units throughout the world are researching Antiphospholipid Syndrome; The unit at St Thomas’ obtains some funding from the Hughes Syndrome Foundation and publishes up to 40 research papers each yeaaps3r; and The London Bridge hospital is now carrying out studies with groups in America, Argentina, Brazil, France, Italy, Japan, Portugal and Spain. The International Antiphospholipid Syndrome meeting (Dr Hughes first started this in 1985) is now in its 12th meeting, and it attracts up to 1000 doctors and researchers. The discovery of Antiphospholipid Syndrome in obstetrics has meant that the odds of carry a baby to term has increased dramatically; before the discovery patients only had a 20% chance of a successful pregnancy but treatment patients now have an 80% chance.

General treatments

The aim of treatment is to ‘thin’ the bloody so that the tendency to clot is reduced, this is achieved with anticoagulant medication. There are currently three main anticoagulant medications (aspirin, heparin or warfarin) and for most patients one low dose aspirin (75mg) a day is enough to stop the blood from clotting. Heparin (such as Fragmin) is a very effective anticoagulant and is offered in injection form. It cannot be used for long term treatment due to an increased risk of osteoporosis. It is, however, used in some Antiphospholipid Syndrome pregnancies, as warfarin is potentially toxic to the developing baby.

Aspirin 

  • aps5Low dose aspirin (baby aspirin) – at a dose of between 75mg to 100mg a makes the blood platelets less sticky.
  • Side effects are rare (indigestion; allergy especially in asthmatics)
  • Safe in pregnancy

Heparin

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  • Newer “low molecular weight” heparin (such as Fragmin) has replaced older preparations
  • Only available as injection
  • Used to treat thrombosis, prior to warfarin use
  • Safe in pregnancy

Warfarin (Coumadin)

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  • Warfarin is a safe and effective medicine; despite being dismissed as ‘rat poison’ by some journalists
  • Side effects are rare – the only vital issue is to keep the dosage correct
  • The thinning of the blood achieved by warfarin is measured on an ‘International’ scale called ‘INR’ ‘Normal’ is “1” – half thick blood is “2” and one third blood is “3”
  • Not allowed in pregnancy

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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Grief and your married life

It is so important to try to keep a sense of closeness while you mourn the loss of your child; we were told by our hospital chaplain that we have a strong relationship and he can see the love that we have for each other… a lot of marriages and partnerships are ripped apart after the loss of a child; not surprising really when you consider that it’s the most difficult thing that you will ever experience.

I was never actually worried that we may fall apart as, although we have our ups and downs, we have always got through things together. However, the impact of Sophie’s death did have a massive impact on not just our relationship, but on our whole family…IMG_0686 we still keep a sense of togetherness, but things have changed. My oldest son became very withdrawn and suicidal at one point, he is luckily on the road to recovery; my middle son gets sad and has the occasional bout of anger, but this has also got better over time; and my youngest son is too young to realise about his sister, however he does ‘feed off’ of any tension in the house and that can make him either aggressive or weepy. As for me and Paul, I find it difficult to look a young baby and although I am happy for them, I do still feel a pang of jealousy. Paul seems ok, but he is also known to bottle things up.

It can also put strain on a relationship because it can be difficult to understand how your partner feels, and how the grief has affected them; we are individuals and therefore we all grieve differently… men often grieve differently to women and this can put a huge stress on the relationship; understanding and supporting each other is necessary in order to remain a sense of closeness.

Here is an example of the differences that I have either experienced or seen in the past, I have labelled the columns ‘wife and husband’, however, this can be reversed as it is just to give an idea of the differences in the grieving process, neither is right and neither is wrong, they are just different and both are just as valid.

Wife

Husband

Grieving too much Not grieving enough
Wants to try again Doesn’t want more children
Wants to talk about the loss Doesn’t want to discuss the loss
Can’t face going back to work Goes back to work to take his mind off of it
Takes offence with inconsiderate comments Says it’s ok because they mean well
Include your loss when asked ‘how many children have you got?’ Only includes living children when asked ‘how many children have you got?’
Be affected by depression and anxiety Hide their feelings and keep positive
Find faith and go to church Lose faith and stop going to church
Join support groups, talk to other bereaved parents, or campaign for a baby loss charity Doesn’t want the constant reminder of loss
Finds it hard to see a future Wants to look to the future and make plans

So you can see how easily relationships can break down when the couple are grieving in such different ways, the strain is sometimes unbearable… but with understanding you can support each other.

20160311_155055In my personal experience, the grief changes as time goes on, but it never goes; the hardest thing to deal with at the moment is the fact that my grief comes in ‘waves’… it’s been 16 months since Sophie died and I’m still getting waves of grief which take me by surprise. I can be watching TV and something will trigger me (like an advert for mothercare) and all of a sudden, I’ll start crying out of the blue! I sometimes get overwhelmed by things that I used to do (cleaning the house, washing, ironing etc) and I just want to run away from it all… this can cause issues between Paul and me.

I get flashbacks too; I see my pregnancy with Sophie, her birth and her death as if it was yesterday; and I can still remember the conversations we had with the doctors and midwives when she died word for word! I can see, by looking back, where the mistakes were made; but having no way of proving it can consume my thoughts.

After my bereavement midwife explained that we need to try to remain close as a lot of marriages break down after the loss of a child, I set about to find the facts and statistics for this. What I have discovered (and experienced first-hand) is that losing a child will exaggerate existing factors of your relationship. So… some relationships get worse, and maybe end in separation; some get better and you become closer to your partner; and some just stay the same.

As mentioned before, maintaining your relationship will take patience and understanding… it is not easy, in fact the strain can sometimes be suffocating! I don’t have a crystal ball and I can’t see the future, but I am very proud of the way my family have stuck together and I hope that we always will; and with patience and understanding, you will too.

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I want my baby back!

When I say to people that ‘I’m having a moment because I miss Sophie’, why do they then insist on saying ‘still? Do you think you need help?’. I find it upsetting that I can’t just tell people why I’m feeling sad, all I want is a hug and for them to say, ‘I know, and you have every right to be’. I do have a right to be sad, it doesn’t happen all the time, I don’t sit there every day feeling upset, down or depressed… but I do have every right to miss Sophie.

To put my loss into perspective Sophie has been gone for 16 months… That is not a huge amount of time, regardless of what people think. During those 16 months, my family have been through hell and back, but we still keep pulling through and I am so thankful for the family I have got. However, that does not make Sophie’s death less important and right now all I can think of is I want my baby back! She should be here and not buried in the cold, hard ground… it’s not right, it’s not fair, and it never will be.

Sophie was born sleeping on 11th March 2016 at 2.09pm, that was 490 days, 18 hours and 21 minutes ago; that is not enough time for me to stop feeling sad! Even if I break it down further to 706,701 minutes… it sounds longer but it really isn’t! Every single one of these days I have felt sad moments and moments of regret, I relive what could have, and should have, happened to save Sophie; and I have flashbacks and remember exact conversations that I had with the doctors after Sophie died.

So, for everyone who thinks I should ‘be over’ my daughter’s death by now, but has never experienced the loss of a child… you have absolutely no idea what you are talking about and I hope you never do; because pain like this I wouldn’t wish on my worst enemy. This is a lifetime of pain and a lifetime of guilt and regrets.

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Does Baby Loss Make Others Feel Uncomfortable?

Does baby loss make other people feel uncomfortable?

Probably yes!!! No one wants to think about this as a possibility… I never thought for one second that it would happen to me; especially after having three heathy children. However, the fact is that it can happen to anyone which is the reason that it should be spoken about; not to frighten people, but rather to make them aware of the warning signs and risk factors. Of course, sometimes there are no warnings which makes the loss even harder to comprehend, but people need to be aware of the subtle changes which can take place, which can be the difference between life and death.

When I think about whether my loss makes others feel uncomfortable, I think it probably does, and let’s face it… it should do!!! I say this because it is not ‘normal’ to go home with empty arms; it is not ‘normal’ to have to tidy away all your baby’s belongings, fold and pack away all the clothes that will never be worn, the crib, bottles, breast pump, blankets… It’s amazing how many things there are, and it’s not ‘normal’ to pack them away in the loft, knowing that they are unused, and yet you can still never part with them; and it is certainly not ‘normal’ to bury your child, watching his or her coffin being lowered into the cold, hard ground. Therefore, it’s unsurprising that baby loss is a subject that no one wants to talk, hear, or think about.

I would, however, encourage people to talk about their baby, regardless of how it makes others feel; it is one of the most powerful ways to raise the awareness that this really can happen to anyone.

How do I react when someone says that my loss makes them feel uncomfortable?

Yes… this has actually happened a few times! And do you know what? It doesn’t bother me in the slightest! It used to though, I used to get really upset, and then I would stop writing Sophie’s blog, stop posting on Facebook, and generally stop talking about my daughter; knowing that I was making other people feel comfortable meant that was almost frightened, and apologetic whenever I mentioned Sophie.

However, my response is very different now; I don’t force anyone to listen, read my Facebook posts and blog, or look at her photos; therefore, they are welcome to hide my posts if they wish. My view is that this is something which my family and I live with every single day, and for that reason I will never stop talking about my daughter who should now be crawling, learning to talk, and driving me up the wall!

She may not be here with us, but I refuse to stop talking about her and sharing her photos, in case it makes others feel uncomfortable; because my response to them would be ‘I’m sorry it makes you feel uncomfortable; but how the heck do you think it makes me and my family feel!?’