Sunday, 18 February 2018

A few weeks ago the charity was contacted by a student midwife who wanted to come and meet us to find out about the work we do. She wanted to improve her knowledge of the bereavement support out there for families following the death of a baby or a child and had found us during a Google search.
She spoke of how surprised and shocked she was that there were very few groups out there specifically for baby and child loss bereavement support. She said that she felt unprepared to be faced with a family that was having to deliver a stillborn child or a child that was likely to pass through illness shortly after birth.

We are always happy to welcome anyone to come along to meet us and we felt that this could be a really good chance to let the future of midwifery know about what is and isn't out there for families. 

Since we began the charity we have always said that we want to work with the NHS and any other agency that works with or comes into contact with parents and families that have experienced the loss of a baby or child. We have never wanted to antagonise these people or, as many of them think,  'have a go'. The only way to make improvements and identify areas for improvement is for everyone to work together. Unfortunately we have at times found resistance to meet with us.

This week the midwife came along to one of our Community Support meetings.
She explained that during their training there is no specific training given on bereavement and the support needed around it. It is expected that if the students wanted to learn more about it they were to do so off their own backs and in their own time.
This to us is absolutely ludicrous.
How can staff be expected to support families through a loss when they have not even been given basic training around bereavement. 

So many families we come into contact with say how they felt that the nurses and midwives didn't know how or what to say and do around them and they often felt that they looked very awkward and uncomfortable.

Grief is a very complex state and can show itself in many ways. It can lead onto other illnesses and will show as physical conditions. If the staff are not trained to identify these signs and symptoms how are the families expected to receive an adequate standard of care. It is not even the nurses fault, as I am sure many of them if not all would be happy to undergo extra training.
Even just typing that makes me feel angry and so worried for the families that are still being let down by the system that is supposed to be there to help them.

Bereavement support after the loss of a baby or child has been given a lot more air space on TV and radio lately and many trusts have already started reviews of the midwifery services in their area/trust. However when you look further into it the area of bereavement midwifery services only usually takes up a very small section of the review. It seems to still be an area that still does not get the acknowledgement it deserves and needs. 

The midwife who visited us seems very keen to improve her knowledge and was enthusiastic about trying to do some voluntary hours with hospital staff who work within the bereavement teams. I know this is just one nurse, but 1 is a start and hopefully she will go back and tell her colleagues and tutors about us and the others that are out there supporting those families. 

It was also good to be able to share ideas about how simple changes to the systems used both in hospital and in the community could make such a big difference.
One hospital she had experienced had used a 'Teardrop' sticker on a ladies notes which showed that she had previously lost a baby.
We have always said that there needs to be a way that Dr's, GP's, Midwives and Health Visitors could all communicate effectively to ensure that this information was known by all involved with the family. Such a simple but effective method but one that could really make an impact. If only we could get a standardised pathway across the country that all followed the same way of notifying and recording all important and relevant information.

We know it won't be easy and we know it won't happen quickly but we are ready and willing to keep up our campaign to make these changes happen.

One thing is for sure Charlies-Angel-Centre Foundation will never give up and we will continue to campaign until there are enough bereavement midwives for each NHS trust, there are safeguards in place to ensure that no family falls through the net and gets inadequate support and that communication between all disciplines is effective and proactive.

Initially the charities aim was for Leeds to have the best bereavement support following the loss of a baby or child in the country but now we want all of the UK to have a bereavement service that would ensure that no family has to go through loss alone and that they all received adequate and timely support through whichever services were needed.

Meeting the student midwife gave me a little bit of hope that the future of bereavement support within midwifery services could be ready to improve. If she can realise that there needs to be a better system of support then there must be many more out there that are also starting to see that changes need to happen.




Sunday, 4 February 2018

This week I was contacted by Radio Aire to get my thoughts and reactions to the news that the Health Secretary, Jeremy Hunt, has ordered a review to look at the existing legislation regarding rights of parents when they have suffered a late miscarriage.

Currently if a family experience a miscarriage before the 24th week of pregnancy there are no formal processes that allow them to legally register their baby's name or receive a certificate.
Jeremy Hunt has announced that these parents could potentially be given new rights which would enable them to certify and register their baby on official records.
At the moment only parents whose babies are born at 24 weeks or more have a right to register their child's name and receive a certificate of registration.

The review will look at whether existing legislation should be changed and will look particularly at concerns of expectant mothers being discharged after a miscarriage without the same package of care that a family who have experienced a stillbirth later in the pregnancy does.
It will be carried out by the Department of Health and Social Care alongside the General Register Office for England & Wales and is planning to look at how they could improve wider support including training for staff on how to support mothers after a late miscarriage.
They are also planning to look at how the NHS could improve access to gynaecology, maternity and bereavement care after a late miscarriage and other causes of baby loss.

Mr Hunt has been quoted as saying
" There is nothing more agonising than losing a child, so I am passionate about our national mission to reduce stillbirths and neonatal deaths, but we also want to take a fresh look at what more we can do as a health service and government to help support families who do face this devastating loss - particularly for those who lose babies through late miscarriage or neonatal deaths under 24 weeks. Of course nothing can take away that pain, but we think there is more to be done to guarantee the sensitive and compassionate care we would all want for our families at this most distressing time."

I explained to the radio that we have heard parents say that when they have lost their baby before 24 weeks they feel as if their child has been disregarded and treated as if it isn't a baby. They often leave hospital empty handed, not even being given any leaflets or information regarding where to get support or what to do next.

As soon as a couple take the pregnancy test and see those lines telling them they are pregnant their hopes for their child begin. To then have this life dismissed by professionals as merely an 'early loss' is totally devastating. They had begun to make plans about their future with their baby and their child was wanted and loved just as much as a family going through a later loss.

Being able to register their baby and having an official certificate can mean such a lot to a family at this heart breaking time. The acknowledgement that their baby did exist. 
I also spoke of the need for proper communication between all agencies to ensure best quality care is offered as well as a standardised criteria that all hospitals should follow which will ensure that no families fall through the net.

We have been campaigning since 2013 for a review of the systems that are supposed to help and support bereaved families following the loss of a baby.

This review is hopefully going to be just the start of improvements to the current substandard care packages that some areas of the country offer.
Whilst we think that this review should have happened a long while ago we are pleased that something is now being done and hopefully families voices will be heard and listened to.








Sunday, 21 January 2018

Tonight we are sharing the story of one of our trustees.

She came to us for support following the death of her son and after many months decided that she wanted to help others that were going through the loss of their child.

It's 2am and I have been awake over an hour since your bloody inconsiderate father came to bed and woke me.

And I'm thinking of you.

You should be inside me, you should be warm and safe and cocooned away for a few weeks more.I'm sorry, darling boy, that I couldn't keep you safe. I'm sorry you were poorly. I'm sorry that this caused me to lose you and I'm sorry that I left you alone.

I loved you from the moment that those 2 lines appeared. I loved you from that instant. I wanted to keep you safe and loved until you were ready to meet us.

I was so excited.

I was so excited for my little family to be complete. I was so poorly, Jonah. I couldn't eat, I could barely drink, I would wake in the night sick as a dog and still I would go to work.And then I felt you moving. I felt you moving inside of me and it all seemed better, the sickness was worth it and I tried to force something down so that you were getting some nutrients.

 I tried so hard for you, Jonah.

I didn't want you to be poorly, I didn't want you to suffer because I was struggling. I felt so sick that I wondered how I could carry on. I was exhausted, I couldn't go outside.And then a tiny kick. And I knew you were alright.
Except that you weren't,Jonah, and I had no idea.

I had no idea that you were so poorly.

She scanned me, it seemed like it was taking forever. She told me she was looking at your brain "please have a normal brain!" I said, not knowing.

I looked at you, on the scan. I looked at your brain and even I could see something was wrong, no, I thought, it's just you, you can't read ultrasounds.

"There is a problem with baby." She said eventually, after showing us everything, even your adorable little feet. She left us for a moment and I looked at your dad and shook my head. I started to cry.

No one expects bad news, no one.

She asked us if we wanted pictures and I said no. I was wrong to say no, Jonah. I was wrong, but I was in shock.
The consultant came straight away, we sat in the little room next to the scan room and I cried. I told her I didn't want her to see me cry.

I never cry.

She offered me a tissue.

She told us your prognosis was poor, that someone would call...We drifted back to my car. The main road was closed and I just wanted to get home. The one time I just want to get home. I tried to ring my mum, no answer. Emma text me "is everything ok?" "No." I replied. I hadn't wanted to tell her that way but I didn't want to call. "What?" I text my mum to ask where she was. She knew then, she must have. She rang me and I sobbed. "Just tell me, just speak" she told me when I couldn't get my words out, "I'm going to lose the baby", I think I said, I can't remember "oh Bluebelle," she said, "oh darling". She rang me from the car and I told her again so that my dad (a doctor) could hear. "We're coming".

She drove home, left my dad there and she came alone.We sat in shock. My dad waited at home for my sister to come back from work. He told her. I don't know what he said. I don't know how she reacted.

"I'm sorry" she said tearfully on the phone. I had rung work too, in tears. "Oh god, I'm so sorry" my manager said. "That's twice in a week I've rung you crying" I said, through tears.
You jiggled. You told me you were there.

I went for scans, appointments. I waited for phone calls, anxious. More anxious than I have ever been.

You died on a Tuesday afternoon.

I carried you for two more days, knowing that Thursday was the last day you would be inside me. I knew you had died, I knew you were there. No more kicks or swooshes. But I knew. I noticed a new stretch mark. I was actually starting to look pregnant, unlike with your brother. I rang delivery suite on Thursday, waiting anxiously for a time to go in. After what felt like forever, they said 3pm and we waited anxiously. Your grandpa turned up while I was asleep at about 1. He came up to me. Your dad was smirking when he came in and I didn't know why, and then there was your grandpa. He is a lovely, kind, devoted man.

Your auntie drove us to the hospital. We waited at the desk on delivery suite, no one was there. A nice midwife came eventually and took us to our room, a special room, away from everyone else. It had a kettle and a TV.It was posh.

The midwife came a couple of times, the doctors needed to see us, she said, but they were busy in theatre. I nodded, I'm a nurse, I understand. She brought us sandwiches and put them in the fridge. I sent your dad to the shop. He bought us cookies, crisps...Eventually the night shift started. I still hadn't seen anyone. I was fed up. I wanted to meet you. The night midwife was kind, she was reassuring and supportive. Eventually the doctor came, and prescribed me some pessaries to start me off.It could be a long wait.

I doubt it, I thought, I laboured fast with your brother, slowed only by an epidural, it was exactly 12 hours from them breaking my waters. The pessaries were inserted. The gas and air was ready just in case. I watched Grease! Live. On Netflix. The pains started with discomfort. I was texting my sister, Emma and a girl from my wedding forum. I couldn't decide if they were contractions or not. I couldn't get comfortable. It was freezing in there. I buzzed for a blanket but the lady didn't come back. I buzzed again. I was in pain. They were close together. The kind midwife bought in two heaters. I asked for some pain relief, in anticipation of the pains getting worse. She got me paracetamol and dihydracodeine.
 I rolled my eyes but I accepted. When she came back I told her the pains were very close together. She said she would sit with us and see. I told her there was a minute of pain and a minute off. Then suddenly, it was too bad to talk. Within ten minutes, I reckon. I bit the gas and air. I breathed deeply. I heard the weird noise it makes, I breathed out slowly. I felt drunk, thinking of Donald Duck, I don't know why, it's the noise and the mouthpiece I think. I counted in my head, to calm myself. I writhed. I lay on my side. I grabbed your father at some point, I don't know when, he had been happily watching TV with headphones in. I suddenly felt something.

"I'm pushing I think," I cried, "I don't know." I'd never felt pushing before, "I'm frightened". "Don't be frightened," she soothed, "it's alright". There was a gush. I felt you slide out of me. "The pain has gone." I said. I knew you were there. I felt another push and something slid out. "It comes in waves, you know that" she told me. I told her again that it was gone. I felt euphoric, as you do when you have pushed a small human out of you. "If I start to see baby, I will press this buzzer for someone to come." I nodded. She looked under the sheet, "baby is here". She told me. So was my placenta. I was drenched, I was worried Flopsy was ruined, but she told me she had saved him from the waters. 

The other midwife wrapped you up and took you.

I couldn't see.

I asked for my stockings off. I was drenched. I told her I was fast. Just over 2 hours since the pessaries. You were born at 23:55. I got up when they left. I waddled to the bathroom to clean up. Blood everywhere. I stripped the bed and we sat together on the sofa, whispering, deciding if we should see you. I was scared, scared of seeing a tiny, delicate you. I still felt the same, I still felt excited. I wanted to see you. They dressed you in a tiny green cardigan to match your bunny, and a little white hat. They wrapped you in a white blanket and put you in a Moses basket. I didn't want to see your defects. I was scared to. She placed you on my knee, and there you were.

My tiny, perfect little angel.

You looked like you were sleeping, you looked so much like your brother. She showed us your feet, "he's got the most gorgeous little feet" she had said. We sat together, looking at you. "I want to stroke his face" I said. I did, you were cold, soft, but cold. Your dad wanted to as well, but he was scared. I guided his finger to your face. I so wish I had kissed you now but I was frightened to move you. I don't remember what we said to each other. I just remember that when she came back I asked her to take you, before you lost colour. I wanted to remember you asleep, pink... We got in to bed.
Your dad got a whole sofa bed to himself and I was most aggrieved. I lay on the bed, I could hear some woman screaming like a banshee and the doors creaking loudly every time someone passed. She came back with a memory box. She turned the lights out. I didn't sleep. I couldn't. I was texting to let our closest family and my best friend know that you had arrived.

I was happy. You were beautiful.At 7am she came with injections and something to stop my milk coming in. She introduced the day staff, but since we were free to go, I just wanted to leave.My sister came for us.

We left quickly. The midwife passed us as we waited in reception. We waved. Your dad got a costa but I don't think he wanted it really. We drove home, like nothing had happened. My mum had made us sausage sandwiches. Your brother was excited to see us, he squealed loudly in his high chair.

And you were gone.

My head went in to meltdown, tormented with grief, guilt, isolation. My best friend arranged the cremation, made sure he had the bunny we had bought him with him at all times. I had one to match. I squeezed it tight, when I needed it, hoping he could feel my cuddle too. The funeral directors were kind, they looked after him when I couldn’t. They kept him safe. And then I realised. He was gone. I was empty. There is only one way to end the stigma of termination for medical reasons.

Talk about it. Raise awareness.

It happens so much more than you realise. I felt so alone… and then I spoke to someone else going through the same thing and the relief was enormous. We held hands through our grief. Even on the darkest days, I know she understands. My darling boy. My angel. I hope your bunny is giving you cuddles the way I should be. I hope someone is caring for you, wherever you are. I hope that. I don’t believe it, but I hope that. You sit in an urn by my bed. It feels better to have you home with me. I stroke our matching bunny. The milestones are coming… I dread them. I think of you every day, my beautiful boy. I am now used to being in pain. It overwhelms me. But you were born. You are our son. And I miss you, sweet boy

Sunday, 14 January 2018

The work our charity does finds us supporting families that have lost a baby or a child. This is what we set out to do and we couldn't feel prouder of the work we have been able to do and how quickly the charity has grown.

It still amazes us that such a tiny little boy could have such an impact on the world. 
We knew Charlie was special, but we are biased, but now thousands of people can see just how special he truly was. 

Often I sit back and think to myself how different life would have been if Charlie was with us, and in an ideal world he would be, but I now think of all those families that have been able to access the help and support they need and deserve. 
Only this afternoon, whilst I was with Charlies cousins, we were chatting about how Charlie and his cousin Mila (3)would have been great mates causing havoc where ever they went. Although Mila never got to meet Charlie she often talks about him and asks about him. The innocence of childhood is wonderful, life seems so much easier when you are 3.

2017 was an absolutely amazing year for the charity and we are now seeing the hard work we have been doing to make changes to the face of bereavement support starting to pay off. 
We never anticipated that it would be easy or that it would happen quickly but we have all been totally amazed at the level of support we have received, not only from professionals but from businesses, local communities, media and bereaved families.

It can become very emotional for us when we are with other families that are trying to keep going after losing their child but we know how important it is that we are there for them.  Once we get home or have a moment to spare it can then really hit you and it can bring all your memories flooding back. 
I know we wouldn't have it any other way though as we could not sit back and think of families struggling through alone like Charlies mummy had to. We feel very privileged that the families allow us into their lives and share their beautiful baby or child with us. 

Over the last few months we have began to get some of the families that we have helped getting in touch with us to let us know that they are expecting their 'rainbow' baby. 
We love it when we get news like this but we also understand how difficult the next few months will be for them and the emotions it will bring right back up. 
Some parents even tell us that they feel guilty for being pregnant, they feel that it will look to others that they have forgotten their other child or have 'got over it'. This can be a huge hurdle for them to get over and can cause lots of emotional confusion.
Everyone that has told us they are expecting always go on to say that it will be the longest pregnancy ever. We know that the professionals offer much closer screening to families and often they can ask for scans on a weekly basis if that is what the family needs to help them cope through the pregnancy.

It is lovely when we then receive the message or the picture of their new addition. 

It gives you hope for the future and hope for the families.

In 2018 we would really like to start up a 'Hope Board' that will go up in our office. It will be filled with the rainbow babies pictures and we want it to give other families some comfort and hope for their future.

This is where you can help us, if you have had a rainbow baby and would like them to go up on our Hope Board please get in touch with us via our website, email or social media. (www.Charlies-Angel-Centre.org.uk, charliesangelcentre@hotmail.com, 
@CharliesAngelCentre on FB & @charlie29122012 on Twitter).

Losing a baby or child is the hardest thing any parent and family will ever have to do. The road ahead for those families is full of ups and downs and we know how difficult it will be. 

Everyone needs a bit of hope in their lives and bereaved parents even more so.

Sunday, 7 January 2018

January can be a difficult time for everyone, returning to work after having had time off with family over the festive season, short of money through overspending, and those 'back to work' blues.
Imagine then what it must feel like for a bereaved family. 
Whilst others are out celebrating and welcoming the New Year the bereaved family are coming to terms with another year without their baby or child. New Years Eve is just another reminder for them of how long they have been missing a loved one. Often they will go out with friends and try to join in but it can often end up with them crying in a corner feeling very alone.
Often families explain that they can feel guilty that they have gone out or are celebrating and feel that others may judge them for going out or think that they must be 'over it'. Whereas in reality they will never be over it and sometimes going out is a way of trying to block out the emotions and feelings.
Once New Year is over then it moves onto people returning to the everyday routine of work. 
The bereaved are left feeling even more alone. 
Some may still be off work and are suddenly left on their own again which can cause anxiety and isolation. Family members that had been popping by regularly over the festive season are now unable to do so. Partners who have been there for you are suddenly having to go to work. 
You may have also returned to work and that feeling of going back is unbearable, everyone says that New Year is out with the old and in with the new. You fear that workmates will be thinking that you have moved forward and will try and hide your true feelings because you don't want to feel like a burden. 
New Year to me now has a totally different meaning since we lost Charlie, and it has changed how I approach people after the celebrations have finished. I now understand that many people will be feeling similar to me but again like me are trying to cover their feelings up. People don't always disclose a loss to colleagues so if you see a workmate who seems quieter or more isolated spare a moment to say hello. Just saying hello shows them that you care and can sometimes give them the courage to open up.
One of my New Year Resolutions was to try and spend more time chatting with friends, colleagues and families we work with. Communication is the main way to achieve things and can make a huge difference to someones life.
In an ideal world we would all be able to be nicer and more understanding of each other and realise that lots of people are struggling through things we know nothing about, but life is busy and life is hard. 
If nothing else we can all share a smile with others as we go about our daily life. That smile might be the only friendly face someone has seen that day and could mean such a lot.

Sunday, 31 December 2017

Friday 29th December 2017 was Charlie's 5th birthday.

This is always going to be a date in the year that is extra hard for his mummy and the family. Naively we thought that as each year passed it would get easier to cope with the day.

We were very wrong.

I have found this year strange because I cannot get a picture out of my mind of what a 5 year old little Charlie would look like. 5 seems an age when children are starting to explore the world more and can interact with everyone so much more.
This Christmas would have been one when he would have been loving ripping open his presents and getting excited about Santa visiting. 
Carrie made a lovely photo for her special boys birthday and she wrote some beautiful words to go with it.



"I am forever changed for having known the gift that was you. I miss who you were, who you would have become and who I was going to be. But I am a better person for having known you, if only for a moment. Happy 5th Birthday Charlie 🦋 Have A Wonderful Day My Angel, I miss you so much and I love you even more 💙Till we meet again.
Mummy... XxX"


Every year we always make sure that we do something that we think Charlie would have loved joining in with. This year his mummy decided to go to Pizza Hut. 

Since Charlie's birth two of his uncles now live away from Leeds and unfortunately were not able to come up for the 29th but they did make sure that they did something on the day to remember and honour him. 
There were 13 of us all together and it always makes it feel special that we come together for this one date of the year.

Everyone had a lovely meal and we were kept entertained by Charlie's nieces.






        



Following the meal we all went over to a small bridge over the river where we all released a balloon. The children were very excited to see how far their balloon would go.




As the balloons followed each other down the river a little voice said "Bye Charlie, Love you". It was Charlie's youngest niece 3 year old Mila. Such beautiful words from such a little but beautiful girl.

Carrie then told us that she had made us all a gift to take away with us. When she gave them all out we were just amazed, they were absolutely beautiful and each one was individualised.

Thank you so much Carrie for such wonderful gifts in memory of your special little boy.

We know you were looking down on us Charlie and helping us to stay strong. We Love you so much and miss you every day.

Charlies-Angel-Centre.org.uk