You Have to Live On

Last night I was watching an episode of Eastenders which made me think and analyse my own emotions; and how much these have changed since Sophie died. For those of you that don’t know, Eastenders is a Soap Opera in the UK; Max Branning has lost his daughter Abi, she is now brain dead and they are preparing to turn off her life support machine; he is obviously, like any grieving parent, a complete mess; Dot Cotton is trying to make him look to the future, and the speech she gave really made me start to think! In fact it kept me up last night wondering how my feelings, and the way I view ‘carrying on’ have changed over the last 22 months.

Dot’s speech went like this: ‘Don’t you think it’s time that you stopped hiding yourself away? Life can be very cruel and to lose a child is against the natural order of things. Is it because you feel guilty, that it was all your fault? You have to carry on for the sake of them that are left, Because they (the ones that have died) live in your memories, and you’ve got to live for them too; And you’ve got to live for yourself’.

Don’t you think it’s time that you stopped hiding yourself away?

When Sophie first passed I did hide myself away, I think that’s natural! I am still guilty of that now, although not as bad! I do like my own company though, my own thoughts… it’s just the way I am! But I do also enjoy the company of others, and they have helped me to ‘stop hiding myself away’. At first, I think it was the fear of people looking at me, not knowing what to say and just giving sympathetic glances in my direction; after a while I think the low motivation took over and I think I just wanted to shut out the world… this is natural and something which you have to work through in your own time.

Life can be very cruel and to lose a child is against the natural order of things

I can’t argue with this! No one expects to bury their child, and it is just heart-breaking that there are so many of us out there who have been in the position where we have to lay our child to rest.

Is it because you feel guilty, that it was all your fault?

Well… yes actually! Most grieving parents feel like this at some point, I know I have! I felt like I should have waited longer at the hospital, waited for a doctor, asked for a doppler scan; but hindsight is a wonderful thing, and I can’t change the past. However, there is one thing I want to tell you… it is NOT your fault… not even remotely your fault! It is cruel, and it is unfair; but it is not your fault.

You have to carry on for the sake of them that are left

My children, my husband, my family and my friends were the reason that I carried on in the early days. I HAD to get up to make sure Brett and Brendon got to school on time, I HAD to get up to take Aiden to toddler groups so that he could socialise, and I HAD to get up for Paul, so that he wasn’t left to deal with everything on his own… he was grieving too! My family and my friends were the only reason that I carried on; because if I was on my own, I’m pretty certain that I would have stayed in bed, staring at the ceiling, all day, every day!

They (the ones that have died) live in your memories, and you’ve got to live for them too

This is so true! Sophie lives on in our memories, and I try to make her proud with everything I do. Sophie is helping so many people now with the support group which is fantastic! Helping others, helps me to see a future; She is raising awareness with the petition; and many people across the world know about Sophie and her story. She is one of the reasons that I do carry on, I campaign for change for her, and I help people for her.

And you’ve got to live for yourself

This one was harder, but now, I am pleased to say… that finally, after 22 months, I am now living for myself too! I see the fun in life once again, and I can look to the future.

If you would like to sign and share the petition to reduce the number of preventable stillbirths, then please click here. It only takes a minute and would mean the world to me, my family, and other grieving parents.

If you have been affected by stillbirth, miscarriage or infant death, then you are very welcome to join Sophie’s Angels.

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Broken Chain

This is a poem which means so much to me! So I thought I would share it here

We little knew that morning,
God was going to call your name.
In life we loved your dearly,
In death we do the same.

It broke our hearts to lose you,
You did not go alone,
For part of us went with you,
the day God called you home.

You left us beautiful memories,
Your love is still our guide
And though we cannot see you,
You are always by our side.

Our family chain is broken
And nothing seems the same
But as God calls us one by one
The chain will link again.

Ron Tranmer

How do Other People React to the News of Stillbirth, Miscarriage or Infant Death?

I have personally found a whole range of reactions; and the reactions tended to be different depending on how far along I was into the pregnancy. When we had our first miscarriage in 2015 I was 10 weeks pregnant; this was classed as a missed miscarriage, meaning that the baby had stopped growing but was still inside my womb; I had to have some medication (misoprostol) and wait for the miscarriage to happen… I found the reactions from others to initially be one of shock, but very soon they started to offer help and support, their reactions were very positive and they ‘kept me going’.

When we lost Sophie there was a lot of shock and disbelief… I was so close to my due date that this news really hit a lot of people quite hard. Even more so as I told them that I was booked to be induced and would have to go through labour to deliver her… everyone was just so shocked at that! I don’t actually know how else I was expecting her to come out, but I wasn’t expecting to have to go through labour! After Sophie was born my family and close friends were just amazing, and they reacted in a way in which they wanted to help. However, not everyone was like this! The first time I walked to the shops was about a week after she was born; and I noticed that people were now avoiding me, trying hard not to make eye contact and one lady even crossed the road so she didn’t have to make small talk! This upset me a lot at the time as it made me feel abnormal! I realise that people often don’t know what to say, but it’s always better to say something rather than nothing!

With my miscarriages since Sophie I have had comments such as ‘maybe you can’t have any more children’ or ‘maybe it’s time to stop now’, some people are supportive about us trying again, and some are not! But I tend to block out the negative ones and these days I don’t let people know if we have a positive test! It’s my way of protecting myself!!

I asked the members of Sophie’s Angels about other people’s reactions; some members would like to remain anonymous and some have said I can use their name. So below is what some of the members of Sophie’s Angels say:

Brittany: When it comes to still birth and infant death it’s something people don’t want to think about happening. When it does happen it makes people uncomfortable. In our case some of my family didn’t agree with me keeping my daughter in the room after she passed and they didn’t want to see her. When I played a video of her pictures at her funeral some people were very uncomfortable. They didn’t even look. I don’t think people know how to react because it’s hard to think about ever losing an innocent child. I don’t think they know how to approach it.

Anon: I get stuck when someone asks how many kids I have. I don’t want to hide Audrey but at the same time people either make a big scene with a very loud “oh my god I’m so sorry” or they get quiet and seem to want to avoid me or the whole topic of kids altogether. I definitely prefer reaction number 1 over the 2nd one. Loss mom’s already feel alone when people avoid us or talk about us like we are not there furthers the isolation!

Laura: Often people change the subject and feel uncomfortable around those who have lost a child. Everyone seemed to just act like it hadn’t happened especially those close to me. People need to know that we as parents to an angel sometimes need to talk about our precious babies.

Shayna: My experience was just three months ago . It was my first loss to my second born son. . We went to our 20 week scan and was told there was no heart beat and due to chromosome issues the sexton hadn’t formed . My Dr gave me 2 options , d&e (c) or delivery . My partner only had two days off and they kept saying that d&e was the faster option. I couldn’t do that to my baby so I chose delivery. I scheduled it for those two off days but felt so scared and wasn’t ready to let my child go . I say Fate happened and my oldest unfortunately caught a high fever so I took him to the ER when I should of went to l&d. I waited 2 weeks and finally miscarried on my own then went to l&d when I started bleeding . I delivered a beautiful baby boy who was completely perfect . His umbilical cord had wrapped around his neck twice .
People asked me while I waited what I was going to do and most agreed d&e would be better to get back to my family faster. My mother in law even asked why I would want to go through the pain of seeing and holding the baby. (She had a full term stillborn) but I don’t think I would of done it any different . I wanted my son . I’m grateful for his life inside me and I’m grateful for the chance to have held him and seen his beautiful face . I tell people I have two sons but one just happens to be my angel.
I WOULD LIKE TO TELL PEOPLE DON BE SORRY FOR ME BECAUSE I NOT SORRY TO BE HIS MOM!!

Christina: No one imagines losing your child it’s not something to go through alone it’s very upsetting as of everyday there’s always one little baby’s heart stops beating and I think hospitals should do more during the 9 months of pregnancy

Anon: In my experience people avoid you / the subject when they see you 1st…then they message you apologising for avoiding you because they didn’t know what to say!! I’ve never been offended by anyone’s behaviour EXCEPT that of my father in law, brother in law and grandmother in law……they have not visited, telephoned, text, offered my fella any support…he banned them from attending the funeral ( grandmother had the cheek to ask my mother in law!)

Miranda: Some people don’t know how to respond to miscarriage because they might not have even known you were pregnant. I consider most initial responses to my losses to be from shock. I usually just take hold of the conversation immediately by talking about my angels. I think people tend to be more comfortable if they know how YOU feel about your loss. I’ve lost two beautiful babies and I still struggle when someone has a loss because I never know how someone else is grieving.

Anon: was a shocker when I told my father. I really struggle to talk of it. For me, it’s not one loss, it’s 5. My husband’s family pretended my miscarriages never happened.

Mendy: It’s still so new for me. But I find myself sharing our story at random times. Last time was at my work Christmas party, random ride share moment, but the one that I experience most is, my Boss and I had a “get to know me” conversation. Her mouth dropped and tears formed so fast she alarmed me. I then reactively apologized “I didn’t want to make her sad”. She shares her story of her miscarriage. Even says that her story is still nothing like mine but she can understand the possible mood swings.

Anon: Everyone reacts completely differently. My dad and my brother struggle we don’t do death well in our family we are very matter of fact so losing a baby at 29weeks was a tough one. They are in to protective mode and just want to take the pain away something they can’t do and I can tell they feel helpless. Was so late in the pregnancy we had to tell Facebook as we had already announced that we were expecting. This brought up a number of things. It’s amazing how many old friends offer support and you suddenly realise the amount of people who have lost a child at some point. However one friend who I was very close with in secondary school it annoyed me. She had not acknowledged me being pregnant with my sunshine or any photos of her. She even avoided me at the park. Hadn’t acknowledged I was pregnant with Joshua but when she found out id lost him sent a message starting with “heyyy chick…” for me I felt this was for her benefit and she wasn’t thinking of me at all. Then some of my closest friends have been brilliant just letting me talk and crying with me . But my friend said when I messaged her all she wanted to reply was wtf are you kidding? Obviously she didn’t lol.

Conclusion

It is obvious from my own experience, and the experiences of others that I’ve spoken to, that just as no two people grieve the same way, no two people react the same way either. We all have different ways of coping, and we all have different was of reacting to bad news. However, one thing remains constant… it is always better to say something rather than nothing!

How I feel – 22 Months On

How has it been 22 months since you left us? On one hand time seems to have flown by and on the other it has gone in slow motion. It’s a very bizarre thing! I am trying to find the words to say how I feel; I have written and rewritten this so many times, and the truth is… I just don’t know!! I still have so many emotions, and so many triggers. People don’t tend to see the real me! They see the happy, strong, organised me; but they don’t see the ‘me’ behind closed doors! They don’t see the ‘me’ who is jealous of every single pregnancy announcement, and the don’t see the ‘me’ who suffers with anxiety, who is so protective of my other children, and paranoid about something happening to them that I had a panic attack when there was an incident at my son’s school… my son wasn’t even involved but it still caused a major panic attack. These are the things that I keep to myself, these are the feelings that people don’t realise affect me, this is the ‘me’ that I tend to hide.

Because I’m still not sure exactly how I feel, I will start by talking about the feelings and emotions that haunt me, before talking about the positive way I feel… as I’m sure that the good outweighs the bad!

After so many losses, I am still triggered by pregnancy announcements and birth announcements, I still struggle to see new born babies, and although I recently held my friends baby (who I adore) it is hard. I am sorry if this comes across badly; I am truly very happy when someone is expecting, and when their baby is born; but I still feel that pang of jealousy… I don’t show it, but it’s there! My anxiety became quite bad recently, and I finally (after months of my husband pleading) saw the doctor, I am now on anxiety meds and waiting for an appointment for therapy to help with my panic attacks… This was an important but difficult step for me to take, as I like everyone to think that I’m in control and everything is ok!

Now we move to my other children. As you know, I have 3 boys Brett (18), Brendon (12) and Aiden (4); all very different characters but all lovely in their own way. Brett is going through a hard time at the moment, we are trying to get an ‘all over’ assessment by the doctor (we have an appointment tomorrow), because since Christmas he has been really unwell. We’ve been to the doctors 3 times so far, but I’m hoping that by seeing a different doctor tomorrow we may get better results! He needs referrals to lots of different departments to find out why he’s so unwell; and hopefully get him back to college. I worry about him so much because he IS very unwell, and we don’t seem to be getting answers! My middle son Brendon is very outgoing, he enjoys sports and loves to take a football to the park with his friends. This causes me so much anxiety, I ‘have’ to take a step back and let him have fun… but it’s so hard! I like him where I can see him, and I can’t see him if he’s out playing! I try not to make it obvious; going out with your friends is a good thing… but to the ‘me’ that I hide, it is scary! Now we move on to Aiden; he is a ‘character’… that’s they only way to describe him!!! But, my goodness he seems to find danger at every turn! He is always hurting himself, knocking things over, bumping into things… these are normal things for a 4 year old, I know that, but I still can’t help feeling worried! He is probably my biggest worry at the moment, as he doesn’t seem to recognise danger, and he is always putting himself in dangerous situations (Opening the oven door, running in the road, putting his fingers in the hinges of the door etc).

Losing a child changes you, there is no doubt about that… but one of the biggest changes at the moment is the paranoia that something might happen to one of my other children… and this I find hard to shake.

Now I’m going to move on to the things I am grateful for. I am very thankful that I have such an amazing, loving family. Paul and I have become closer throughout the losses, and as I know this can tear relationships apart, I am really pleased that this hasn’t happened with us! My children are happy and healthy (apart from the health concerns with Brett, but we will sort that one out!!), and we are very close as a family; we always keep the lines of communication open so that helps a lot! I am also grateful that I can speak to my mum and step-dad, my dad and step-mum and paul’s mum and dad about anything and everything! We really do have a fantastic family and I owe a lot of my strength and courage to them! They have supported me with anything that I wanted to do, and been there to wipe the tears!

My friends are amazing! I have both friends that I see, and online friends in the loss community… after losing Sophie I ‘lost’ quite a few friends and was upset for a long time; however, the friends that I have now are the most amazing people! It is true that you find out who your friends are when something tragic happens!

I am really happy that I have been offered an unconditional place to study Midwifery at Canterbury Christchurch University in September. Not many people would be happy to receive an ‘Anatomy and Physiology’ book, or a blood pressure monitor for Christmas… but for me… I was over the moon!! I’m excited and nervous!

Sophie has also given me the opportunity to help other people, which although it hurts like hell sometimes, I feel very privileged to be able to do it! Sophie’s Angels has grown so much recently, and although biased, I feel I have the most amazing admin team! They are always there for people, and we all truly care about the members of our group; some of which have become good friends, or formed friendships on the group. It has been great to see the group change and develop! Our Angel Sophie has also grown which is fantastic! More people are hearing Sophie’s story and more people are interacting with the page. Our Twitter Page is slowly growing and I’m finding this to be good way to communicate with a range of organisations and people. I am thankful that we have had media exposure, and were in the Mirror Online twice last week! This article focuses on Sophie’s Story, and this one focuses on the things not to say to grieving parents.

I am extremely grateful with the support that has been shown for the Petition, there are far too many preventable stillbirths and this need to change. At the time of writing this we have 3,069 signatures… still a long way to go, but it is rising and it is gaining awareness! If you could sign and share it then it would be really appreciated.

So, yes, there are now many things that I am grateful for! And although I still get ‘triggered’ and find some things really tough, I can see that we have a happy and positive future ahead!

Forever loved and forever missed my gorgeous girl, but you are making a difference and you legacy will live on xxx

The Butterfly Awards

The Butterfly Awards are opening their nominations soon, and I have been asked a few times since yesterday about this event! So I will try to explain! The Butterfly Awards is a ceremony which brings awareness and helps to break the taboo surrounding loss. The award ceremony is a black tie/cocktail dress event which aims to celebrate the achievements of people, volunteers, groups or professionals, who support or raise awareness about this. The awards will be held on 27th October 2018 at Chesford Grange Hotel, Warwick.

The Butterfly Awards 2018 Award Categories 🦋

  • Inspirational Father
  • Inspirational Mother
  • Bereavement Worker
  • Author / Blogger
  • Awareness Advocate
  • Healthcare Professional
  • UK Support Organisation
  • Cherished Keepsake
  • Best Hospital Bereavement Care
  • Midwife of the Year
  • Most Valuable Contribution
  • The Thank You Award

People, organisations and groups can be nominated for more than one category, so get your thinking caps on and work out who you plan to nominate in advance!! Voting will open soon, but the date hasn’t been confirmed yet! I will let you know when voting is open, and you can vote for anyone who you feel has helped you, raised awareness etc.

If you want to follow The Butterfly Awards for up to date information, please visit: https://www.facebook.com/TheButterflyAwards/

And to view the website, which should be updated soon, please visit: https://babylossstar.co.uk/2016/07/29/babyloss-star-awards/

 

An Open Letter to a Grieving Dad

I am so sorry that you are in this devastating situation, I am so sorry that you have lost your precious baby and I wish I could take your pain away and make everything ok again. It is hard being a dad walking this path, everyone is asking how your partner is coping, how are your other children coping, if there’s anything they can do to help your partner and do you think she would benefit from extra support like bereavement counselling. You answer this questions, you field the phone calls, you try to protect her and comfort her; while all the time inside you are screaming ‘what about me!? I’ve lost a baby too!’.

As a man you feel you need to be strong, you feel protective towards your partner, and you feel that you need to give her a shoulder to cry on; well, I need you to know that in this situation you don’t need to be strong, you can be protective whilst also grieving your loss too, and you also need to have a shoulder to cry on, to vent at, to shout and scream about how unfair this is… because it IS unfair and it IS ok to express that, to let it out, and to hate the world.

Right now, you might have more questions than answers; you may not have received the test results yet or they might not give a definite reason for your baby passing. This limbo is horrible, it really is, and it is my hope that 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 also know that as time goes on, more people will almost expect you to carry on (much sooner that your partner), they will expect you to return to work (maybe before you are ready), they will expect you to be the strong one… I want you (even though it’s hard) to block these people out, there is no time limit on grief, it ebbs and flows; these are people that fortunately don’t know how it feels to lose a child; they are the lucky ones.

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 dads 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’. One where you find ways to honour your baby, whilst also looking towards the future.

I know (from my husband) that as a loss dad it can be very hard, people need to realise that you lost a child too, and you are hurting. Please share your baby and your experience as much as you want; your baby is not just a statistic… he or she is a baby with a family who love and miss him/her, and therefore he/she deserves to be recognised and remembered. I know that, occasionally, as a loss dad, 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, upset and alone.

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. 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.

I want to let you know that it’s 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, or you may want to do things to keep busy… both of these are perfectly ok. 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.

Lastly, I want to let you know that it is ok to not be ‘strong’; it is ok to shout, scream, cry; it is ok to shut yourself away and it is ok to not want to talk about your baby if that helps. However YOU need to grieve is ok, everyone grieves differently; and sometimes we can be triggered by things long after we ‘think’ we’ve finished grieving… because grieving a child never really ends, it ebbs and flows like the waves. However, there will come a time, when you find yourself smiling again, you find yourself wanting to look to the future, and you find yourself enjoying life once more; you may not see it now, but it will happen.

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

Maria

xxx

If you feel that you would like to join Sophie’s Angels, then please click here.

How to Know When It’s Time to Try Again

This is something that I have been asked a few times recently. ‘How do I know when the time is right to try again?’ This is a very personal question, and the answer is going to be different for everyone. So, with this post I am going to give a very general answer based on conversations that I’ve had with various bereaved parents.

You are the only person who knows how you feel about trying again, and therefore you are the only one who knows when the time is right. However, there are some things to take into consideration.

• How does your partner feel?
• Have you had all the tests available so that you know any risks in future pregnancies?
• Are you happy with your care team?
• Are you confident that you will be well looked after?
• Do you feel ready, emotionally, for another pregnancy?
• Are you physically healed from your last pregnancy?
• Are you taking any suggested medication?

The main thing is that you, and your partner, feel ready. Rainbow pregnancies are not easy; you are no longer naïve about things that can happen, and this can be very stressful. I would urge you to work with your doctor to make sure that you are fit and healthy, and that any concerns are taken seriously; as this will help to ease your mind.

Some people feel ready immediately, others want to wait a while. What I will say (and I’m being a complete hypocrite here as I wanted to try straight away after Sophie!), is that it is best to wait for tests, especially genetic tests, to come back first; this way you can be sure that the care plan your doctor puts in place for you, is tailored to your individual needs.

I wish you the best of luck when you do decide to try again, and I’m keeping everything crossed for you!

Research into Loss

Tommy’s conduct research into miscarriage, stillbirth and premature birth; they have four research centres (London, Manchester, Edinburgh, and the National Research Centre which is the largest in Europe). Hundreds of doctors and midwives work together across the Tommy’s research centre network to improve pregnancy outcomes for both mother and baby.

There are specialist clinics within the centres for women at risk of pregnancy complications, they also have the opportunity for people to join in research trials.

London

The Tommy’s Preterm Surveillance Clinic – This is held at Guy’s and St. Thomas’ hospital, and they have been providing care for over 10 years. Tommy’s states that ‘In 2017, the total number of referrals from women at high risk of giving birth too early doubled compared to 2016. We are now seeing an average of 200 referrals each month’.

The hypertension in pregnancy clinic – This is based in St. Thomas’ Hospital and helps women with high blood pressure. They have helped 150 women since 2015.

The diabetes clinic – This is based at Guy’s and St. Thomas’ Foundation Trust, the clinic helps women with diabetes, women suffering from endocrine disease and other disorders like cholestasis. ‘The research carried out in the clinic has been a driving force for the adoption of universal screening for gestational diabetes’ Tommy’s

Manchester

The Placenta Clinic – This is the UK’s first placenta clinic and was opened in 2009; they work with women whose babies have growth restriction, and study the placenta carefully to reduce the risk of stillbirth.

The Rainbow Clinic – This is based at St. Mary’s and they provide care to women who have suffered a previous stillbirth or neonatal death.

The Lupus in Pregnancy Clinic –Tommy’s is supporting this clinic which helps women with the autoimmune disorder Systemic Lupus Erythematous and related diseases. Tommy’s supports the clinic through access to our research midwives.

The Manchester Antenatal Vascular Service – This is based at St. Mary’s hospital in Manchester, and offers extra monitoring and pregnancy care to women with a history of high blood pressure, and those at risk of related complications. Tommy’s states that ‘MAViS is currently home to exciting research funded by the National Institute for Health Research’. Tommy’s supports the clinic through access to our research midwives.

Edinburgh

Tommy’s Metabolic Antenatal Clinic – This clinic helps women with severe obesity, they have specialists in pregnancy care and diabetes, as well as midwives and a specialist dietician. 25-30 women each week are seen in this clinic. Last year women attending this clinic were 8 times less likely to have a stillbirth than women attending clinics not specialised in helping obese women.

Tommy’s Lothian Preterm Birth Clinic – This clinic aims to continue reducing preterm birth and late miscarriage rates, to improve the quality of care for women and to develop expertise in managing complex cases.

Miscarriage centre clinics

Tommy’s National Centre for Miscarriage Research has recurrent miscarriage clinics in three different sites in the UK. All of these offer close monitoring and care during the early stages of pregnancy to women who have previously suffered miscarriages. They are also able to take part in Tommy’s clinical trials, which hope to provide women with reasons for their loss. The clinics are based in:
• Birmingham Women’s Hospital
• University Hospital Coventry
• St. Mary’s Hospital London

If you would like to be referred for one of these clinics, then please visit: https://www.tommys.org/our-organisation/help-and-support/clinical-trials

If you would like to take part in one of the trials, then please visit: https://www.tommys.org/our-organisation/help-and-support/i-would-take-part-tommys-trial

To sign a petition I made to cut the stillbirth rate in the UK, please visit: https://you.38degrees.org.uk/petitions/cut-stillbirth-rates-by-half

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.