Monday, 30 June 2014

My name is Hayley and i am Charlie's Aunty
I can remember when Carrie-ann told us the good news she was pregnant. I was so happy for her and also happy for the girls Rhiann and Amy to have a little cousin. Rhiann and Amy was very happy to hear the news. They would talk about it like if Carrie-ann would have a girl or a boy or even one of each..
The next I remember was the day of the scan. I can remember being excited to find out how far gone she was. Carrie came to mine after scan and that’s when we found out there was complications. I couldn't quite understand what these words meant and what was going to happen. But I was positive and always held onto the chance. I was proud of Carrie-Ann as she told me they asked her to terminate the pregnancy. She strongly seemed determined to carry on with the pregnancy. I knew this was the best option.

The next few months was hard as we didn't know what she was having or what was going to happen. Each night I would pray for everything to be normal. We couldn't go out and buy a pink or a blue item for our niece or nephew.
Every scan Carrie-Ann went to we prayed for good news. But the amazing thing was Charlie was still fighting so Carrie-Ann carried on with the pregnancy. I was so proud of the strength she had.
The next I remember was Christmas day and Carrie-Ann said she didn't feel right and was having some pains. I thought these could be Braxton hicks. Then on boxing day Carrie-Ann went to the hospital to get checked out as she had the show. (A sure sign baby was coming.) I can’t remember much else but I knew she was in and out of hospital.

Then came 28th December came and Shane (Carrie-Ann’s brother and my partner) rang me and told me Carrie-Ann was in labour. I was so scared. I was hoping and praying the doctors got it all wrong.
I am sure time stopped as it seemed like forever for Charlie to be born.
I was at home with the girls when Charlie was born and I can remember the call I got. I didn't know what to say or what to do. I felt helpless. In a way I felt bad.

I went to the hospital a few days later. I walked in the room and I could see carrie on the bed and Charlie in the moses basket next to her. It looked like he was sleeping. I held Charlie and looked at his face. He was so beautiful and so handsome. To look at him you wouldn't think he was early or had something wrong with him. He looked normal and was the size of a normal baby. 

Sunday, 29 June 2014

Thought I would put some more music on tonight that always makes me think of Charlie. I find music very therapeutic and can evoke so many emotions. Sometimes its not even the music but the words that draw me in. Some of these songs are what Charlies grandad, Gary, listens too.

Miss you so much Charlie our little prince.

Saturday, 28 June 2014

Mummys letter to Charlie

Carrie has said that it is ok for me to share the letter she wrote to Charlie with you all. I think it must have taken immense strength and courage for Carrie to have written this. It was read out at Charlies funeral, Carries tribute to her beautiful, strong little boy.

There's no words than can explain how much I miss and love Charlie. He touched so many hearts and in just 19 minutes lost his life on the 29th December 4.30 am. To me Charlie fought the hardest he could, I find every moment I had with him more precious than anything I have and will ever experience in my life.My baby boy will be with me forever.

Letter to Charlie

I know your not here Charlie but I hope you can hear me little man. Mummy will love you forever no matter how far away you are. I'll be looking at every star, watching you angel.
When I held you after you passed away, I felt you smile and relax as I had you in my arms, you were so peaceful.
My heart felt your heart from the time you were in my tummy to this moment and more. I'll treasure the times I saw you moving on the scans and the moment you looked straight into my eyes when you were born.
I'll never lose the feeling that you were telling me everything will be ok and no matter what happened you'll stay with me.
I think the hardest thing now is saying goodbye because I can't hold you any more, I can't kiss you anymore or hold your hand. I don't want to leave you yet. But I know you need to go and the memories I have of you will push the pain of letting you go aside because nothing can wipe the time I had with you out of my life.

So my little angel, fly high and don't look back. I'll miss you so much. Your safe now Charlie Arthur Curtis in the arms of the angels. Goodbye baby boy, your in our hearts everyday.

Sweet Dreams Charlie


Thursday, 26 June 2014

I have been very blessed to have four beautiful grandchildren. 

I love to spend time with my three little granddaughters, Rhiann, Amy and Mila. They make me smile so much and keep me young. When I am with them I enjoy being able to get down on the floor and play games. I enjoy getting out the colouring books and pens and all sitting colouring and chatting. Every week I get the pleasure of taking them swimming and watching them turn into confident little swimmers. I enjoy sitting and talking to them about what they have done at school. I watch them all develop into beautiful little girls and look forward to seeing them become young ladies. They mean the world to me and I would protect them to the end of the world. 

Sadly I don't get to do all this with Charlie. I often sit and wonder what he would look like now and what would he be doing. I imagine taking him swimming and out to the park. When I am looking around the shops to buy the girls some clothes I often find myself looking at the little boys clothes. 

In my head I imagine him to have brown hair and he looks like his mummy. I bet he would suck his thumb like she used to. He would be toddling around now getting himself into lots of trouble and wearing his mummy out (but she wouldn't mind). He would be going for sleep overs at his nanna's and mamma's and wrapping them round his little finger, getting his granddads to give him piggybacks and play rough and tumble. He would be totally spoilt by his 3 uncles and his aunt. He would be bossing around his big cousins and looking inquisitively at his baby cousin. 

It breaks my heart that we won't get to see Charlie grow up into a handsome young man.

I love looking through all my photos looking at the girls at different ages. We won't get to do that for Charlie, we have lots of photos of him during the time we had with him and these are such precious images. 

We often take things for granted in our lives but since Charlie came into mine I have found that I try to make the most of every moment I get to spend with my granddaughters. Time goes by too fast and we need to remember to slow down at times and make time to spend with each other.

I love you Charlie Arthur Curtis and thank you for making me realise how precious and important life is. 

Wednesday, 25 June 2014

I cant wait for the day when we can open the doors to our own bereavement centre, CHARLIES ANGEL CENTRE .  To see the sign with Charlies name brightly displayed on it will bring such a huge smile to mine and many others faces. We know that it will happen because we are all so determined to make it happen. The only thing we don't know yet is when.

We know that the centre is so badly needed, and not only needed in Leeds. Since we have set up our charity we have found out so much about the lack of support that is out there for people who have lost a child.

Before Charlie, we were like every other person who has never experienced the loss of a child, we would never have thought about bereavement services, or lack of them.

Now we have had to go through the loss of Charlie we have become almost experts on the subject. We all take every opportunity we have to tell others about the lack of services out there and what needs to change. We are all prepared to get out there and stand up and shout about how unfair it is that money is going to other areas and none gets passed down to bereavement support. Only recently we found out that there is so much money being invested in improving IT systems within GP surgeries. How can this be right!!!

Charlie has changed us all in so many ways, he has made us stronger and more outspoken about things we feel are unjust. He has given us the confidence and determination to be able to challenge people in senior positions, even MP's,and ask them to explain why money is not available to help bereaved families. We have become more understanding of what other people are going through and now want to help as much as we can.

I think Charlie has left an amazing legacy and we will do everything we can to ensure as many people as possible know about Charlie and what he has achieved.

Tuesday, 24 June 2014

I wanted to share some of the music that I think have been important to all of us over the last 18 months.

I find that some days I don't feel like talking to others but listening to music helps me with the grieving process. There are songs that were played at Charlies funeral, music I remember listening to in the car, and music that others have put onto videos about Charlie.
I hope you enjoy listening to them.

Monday, 23 June 2014

Charlie was such a special little boy, he has inspired so many of us to get up of our butts and try and do something to help other families who are going through the same. He has given us all a reason to get up each day and get out there and fight for what is right. I don't think any of us ever imagined that we would ever be doing what we are, to be honest I don't think any of us thought we could ever do what we have done.

Normally people who inspire others to try and make changes have usually been on earth for much longer than 19 minutes, this just goes to show how important Charlies life was to us.

Carrie was really let down by the professionals who should have been there to help her on her journey through grief. We have since found out that we are not an isolated case. It breaks my heart to think of all the families out there who have lost a child,whatever the age, and have not received the care and support they deserve.

Watching Carrie struggle to come to terms with what was going on around her was so upsetting for all of us, we were all there for her but we didn't always know what to say to her. Sometimes nothing needed to be said. In a way we were lucky, we had each other. There are many people out there who do not have the support of a family and friends and then they are let down by the services who should be there for them.

Because of all the difficulties we have encountered and the lack of support Carrie has received from the professionals over the last 18 months we have become more and more determined to make a change to the services out there. No one should ever have to fight to get grief counselling, midwife and GP support. These should all just be available.

All of our lives have been changed forever and whilst losing Charlie was the worst thing to ever happen for us, he has made us all reevaluate our lives and realise what is really important.

I am so proud of Carrie and Charlie, there lives and their courage have inspired us all.

Sunday, 22 June 2014

Please don't tell me you know how I feel,
Unless you have lost a child too,
Please don't tell me my broken heart will heal,
Because that is just not true,
Please do not tell me my grandson is in a better place,
Though it is true, I want him here with me,
Don't tell me someday I will hear his voice, see his face,
Beyond today I cannot see,
Don't tell me it is time to move on,
Because I cannot,
Don't tell me to face the fact he has gone,
Because denial is something I can't stop,
Don't tell me to be thankful for the time I had,
Because I wanted more,
Don't tell me when I am my old self you will be glad,
I'll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my grandson,
You can share with me my precious memories,
You can even cry with me for a while,
And please don't hesitate to say his name,
Because it is something I long to hear everyday,
Friend please realise I can never be the same,
But if you stand by me, you may like the new person I become one day.

Saturday, 21 June 2014

Going back to work was very difficult. I wanted to see all my colleagues and the kids at school but I was worried about how I would cope with everyone asking how I was and how everyone else was. I also knew that the children would be asking why I was away, what was I going to say to them, how was I going to say it. I wanted to be honest with them but I also didn't want to upset them.  

I have always been the type of person who gets everywhere early, I think on this occasion it really helped me as I could get into school without too many people being there. The head teacher had arranged for me to initially go in for just a few hours to ease me back in gently. When I walked into the school I did feel nervous, it was weird, I had been working there for nearly a year but I felt like I was a new starter again. I shouldn't have worried, I was given a big hug by a work friend, it nearly made me start crying but it was a much needed hug.

When the children came into school several of them all came up and gave me a hug and said they had missed me, it made me go all goosebumps. The little girl I worked with came running into school, having seen me, and grabbed my hand and pulled me into the school. She made starting back at work easy. 

There were some staff that found it hard to know what to say to me and several did say to me later they were scared of saying the wrong thing or upsetting me. I explained there was no wrong thing to say, just knowing they were there and were supportive was all I needed. I also told them that I would still get upset but the things they said to me were not the things that would upset me. I tried to explain to them that sometimes I could get upset at the most random things, but don't worry about upsetting me, I needed to talk about Charlie and what had happened.

There was one friend who asked if I had any photos of Charlie, this meant so much to me. I had wanted to show Charlie off to everyone and show them how beautiful he was but I was aware that some people might find it upsetting. For my friend to ask to see pictures made me feel like any normal nanna showing off their grand children. Others then also asked to see Charlie, I felt like such a proud nanna. 

There were moments when I would have to take myself off to the bathroom for a while to have a little cry but everyone just accepted this and supported me. 

The little girl I worked with had autism and I really do think she could sense what was wrong. She was not normally very keen on hugs and physical contact but for the first few days when I went back she kept hugging me and wanting to sit on my knee and hold my hand. I don't know if she realised it but she made me feel safe and 'normal' again. I was there to make her safe in her environment but she had managed to turn it round and made me feel safe to be back at work. 

There were a couple of staff members who did make me feel a little uncomfortable but I think, looking back, it was more that they didn't know what to say or how to say anything to me. 

The children did ask me why I had been away for so long and I decided to be truthful and explain in the simplest of terms what had happened. They were amazing, they took it all in their stride and told me it was very sad that Charlie had died but he would now be an angel. They all wanted to look at the tattoo I had had done of Charlies footprint and several of them wanted to touch it. They couldn't get over how little his foot was. I think their innocence and acceptance made it so much easier to talk to them about his death. 

The children at school still talk to me about Charlie now, 18 months down the line, and several have taken it upon themselves to raise money for Charlies charity. It is amazing to think how many lives Charlie has touched.  


Friday, 20 June 2014

The day after Charlies funeral felt very strange. Suddenly we had nothing to organise or focus on, nothing to keep our minds occupied. I think all the planning had almost stopped us from having to face the day to day reality. Now we were faced with having to all deal with how we were feeling.

Dealing with the loss of a loved one is such a hard thing to do and whilst it is good to have family around sometimes it can stop you from saying how you really feel as you don't want to upset each other. I wanted to talk about Charlie and share all the memories we had of him but I also was scared of making Carrie feel more upset. Now looking back I can see how ridiculous that sounds. Nothing I could have said would have made Carrie feel any worse. She was dealing with the worst thing that a parent could go through and she also needed to talk about Charlie. Carrie has said she was worried about upsetting us by talking about Charlie too much.

Because none of us knew what to expect, emotionally, I think we sometimes chose to say nothing. Now we know this is a normal grief reaction and talking is the best therapy.

One of the strangest things I found was how people suddenly expected us to be over the death and moving on with our lives. It felt like they were thinking, the funeral is over now its time to get on with things. How could they expect us to move on so quickly, we were trying to come to terms with one of the most traumatic things to ever happen to us. I don,t think you ever get over something like this you just learn to live with the feelings and manage your emotions. I still have good days and bad days and I know the rest of the family do as well. Charlie will always be a huge part of our lives and we need to be able to acknowledge that he was here and he was and is important.

Thursday, 19 June 2014

January 10th 2013 was the date for Charlies funeral.

I can honestly say I didn't want the 10th to come. For the day to arrive meant we had to say our goodbyes to Charlie. I knew he would always be with us in our hearts but I didn't want to have to say goodbye.

We were all up early, I don't think any of us actually slept very well. Carries friend had come down from Scotland a couple of days earlier to support her through the day.  We tried to keep everything as normal as possible, having breakfast and making cups of tea.

Carrie had requested that everyone wore something blue that day in Charlies memory. This colour has remained important to all of us and now is the colour that represents Charlies Charity.

The family started to arrive at Carries flat and seeing everyone wearing something blue was very emotional. When the funeral car arrived the atmosphere changed, there was a feeling of anxiousness. Carrie sat in between her mum and dad in the car with Charlie on her knee. Her three brothers, Shane, Nathan and Bradley also traveled in the car with them. Her brothers had shown such support for their sister and they all truly showed themselves to be strong men that day. Charlie must have felt very proud of his uncles.

I drove behind in my car with Carries step-dad, Clive, and some friends. The drive seemed to take quite a while but it was also not long enough, if that makes sense. I could feel my heart beating faster as we got closer to Cottingley Hall Crematorium. As we drove in I could see other family members and friends waiting for Charlies arrival.

Carries dad, Gary, carried Charlie into the chapel whilst Carrie walked with her mum, Sam, for support. She stayed so strong.

The service was a real celebration of Charlies life. Shane had found a poem that he wanted to read out and with support from his aunt he did this. The music and songs that Carrie had chosen were amazing, the words from the songs summed up how we were all feeling. The vicars words were simple but perfect. Carrie had not wanted a lot of religious content, she had wanted it more to focus on Charlies fight.

Carrie had written a letter to Charlie which was read out for her as it was too difficult for her to do it. I had tried to hold myself together, trying to be strong, but when I heard the words Carrie had written my strength dissolved. She had put down such wonderful words. It must have taken all her strength to write that letter, She wrote such an amazing tribute to her little baby boy.

Wednesday, 18 June 2014

Over the next week, when people were getting back into routines following the Christmas holidays, we were having to plan and arrange Charlies funeral. We were also having to make appointments to go and register Charlies birth and death. Life seemed very unfair.

Carrie had become unwell following discharge from hospital, with an infection, and we struggled to get the midwife to come out and check her. It felt as if no one was interested in coming to see her as she didn't have Charlie with her. Carrie ended up having only 2 midwife visits, disgusting really when you think she was still experiencing everything any new mum experiences. She needed to talk to the professionals to ask if what she was feeling and experiencing was normal, but no professionals came.

The vicar from the local church came out to see Carrie as he was going to be carrying out Charlies funeral. He was a really lovely man and explained everything to Carrie. He told her that the day would be exactly what she wanted it to be, and she was in charge of how it went. He told her that her and Charlie were the most important people on that day and he was there to make it as smooth as was possible. He managed to make Carrie smile on a couple of occasions, which was lovely to see. Carrie had had very little to smile about but she showed amazing courage and strength. She wanted the day to be a celebration of Charlies short life.

Carrie chose the music and songs she wanted playing, the pictures she wanted in the chapel, the colour she wanted people to wear and the clothes her little boy was to wear. She was focusing on making the day the best she could to honor her little angel. Watching her go through all this you could not help but feel immense pride. She was a 19 year old young lady having to deal with the hardest thing in the world. A lot of people would have crumbled but not Carrie, she stayed strong.

Tuesday, 17 June 2014

The day you came into the world you changed us all completely,
Our lives were touched by angel wings and tiny angel kisses,
We held you in our arms so tight, you fitted there so neatly,
To keep you here with all of us was everybody's wishes.

We watched you take your final breath's whilst in your mummy's arms,
you looked so calm, so safe, so warm, so totally protected.

Monday, 16 June 2014

That first night back at Carrie's home was really strange. We were all very quiet, but it didn't feel odd. It almost felt like no words were needed.

The hardest part was not being able to see Charlie, whilst in hospital we could see him whenever we wanted, now he wasn't nearby. I think this was the hardest part for Carrie as well.

We tried to do normal things, like eating dinner together and tidying up. Trying to keep occupied seemed the way to get by. As long as I was doing something or was trying to concentrate on something I was OK. When we all sat down to watch TV I found my mind wandering back to all the events and going over them in my head.

With it being New Years Eve all the programmes on TV were about welcoming in the New Year and parties. The last thing on our minds was celebrating. We did however all sit up and see the New Year in together.

I think all of us were tired but none of us actually wanted to go to bed.
The hardest times of dealing with the loss of a loved one is the night times. Time seems to go slower and in the dark, things seem extra bleak.
Carrie found it hard not being near Charlie and she was worried that he would be not be ok on his own. I tried to reassure her that the staff would make sure that he was safe.

That night Carrie slept with me, not wanting to be on her own. I remember cuddling her whilst she fell asleep and feeling like I wanted to protect her from all the terrible things that were going on and what she would have to face.

Sunday, 15 June 2014

When you become a Nanna your world changes. The joy of grandchildren is immeasurable. I have been very lucky to be blessed with four beautiful grandchildren. Three of them I can hug and kiss but my fourth is a very special angel.

When Charlie was born it felt fantastic to be a nanna again but i knew it was going to be a physically short term thing. I wanted to soak up as much of him as was possible.

As a family we spent 3 days on the Rosemary Suite at the LGI getting to know and care for Charlie. We were allowed to spend as much time as we wanted with him and were even able to bathe him and change him as we wanted. Carrie spent a lot of time either holding or looking at her little boy. She looked like any other proud new mummy but every now and then you would see the realisation on her face that Charlie wasn't going to be going home with her.

The staff were really good to all of us and kept us plied with toast and tea throughout our stay. They arranged for a blessing to take place on the ward at Carries request and one of the midwives even asked if it was ok for her to be present. They made up a memory box for Carrie containing photos, locks of hair, his first hat and blanket, foot and hand prints, a little candle, his umbilical cord and poems. At the time they were very painful to go through but once out of hospital i think they became Carries constant link to Charlie. I know I liked to look through it for those first few weeks, it made me feel closer to him.

The staff on the ward never made us feel pressured to go home, and Carrie made the decision that she wanted to go home on the 31st December. It was a very strange day, full of lots of emotions. We all spent time having cuddles with Charlie and saying our goodbyes for now. We knew we would be seeing him again but it made it feel more real. Whilst in hospital we were almost cut off from reality and it was our world but now we were going to have to rejoin society.

Carrie showed so much strength, she broke down on a couple of occasions, but considering what she was going through she was amazing. When we came to leave we had to walk out through the delivery suite which felt very wrong but the staff again were very supportive.

Leaving the hospital empty handed, seeing other new mums with their babies must have been so painful for Carrie. Charlie must have been extra proud of his mummy that day. I know the whole family were.

Saturday, 14 June 2014

A mans world

After Charlie died i decided to keep busy and go and see a funeral director to start making arrangements for his funeral to take a little pressure of carrie, this was more difficult than i thought, i came across some that were very machine like, no sorry for your loss it was like sorry here's a leaflet and price guide, i found this very hard to deal with, walking from one funeral place to another i shed a few tears Charlie was someone's son, someone's grandson i felt totally disgusted by some of the funeral places i went to, i did manage to find a lovely one, it was family run one called dodgsons who talked through things, how they worked and what they did, they arranged to come and see carrie at home to, so they could discuss what she would like on the day for charlie, i think that there needs to be more places like them i was grieving and needed someone to show some compassion and understanding, they couldn't do enough to help carrie and for me Charlies funeral was a memorable day that celebrated his short life and i hope we did him proud

Friday, 13 June 2014

A man's world

Hi my name Clive Key
I am one of Charlie's grandads and this is my story.
I supported carrie all the way threw her pregnancy with Charlie going to all the scans and appointments with her, We found out at carrie's 1st scan that things with Charlies wasn't looking good, which in itself was heart breaking and i was so proud of how carrie took this and the bravery she shown throughout the pregnancy with Charlie with every scan that followed she was asked if she wants to terminate but with such a strong heartbeat it wasn't a option Charlie was a fighter and carrie let him fight which was a amazing choice from a young lady.
I'm not a religious man but i prayed for Charlie, boy did i pray for a miracle, but it wasn't to be on the 29th of december 2012 Charlie graced us with his presence and still fought for his life after 19 minutes he passed away, the whole family was heartbroken, but as a man of old school i tried not to show my emotions as i felt it was my job to be brave, be the strong one for carrie, sam my wife (carrie's mum) and for her brother shane, nathan, bradley, i gave them all a hug then removed myself for a moment to shed a tear, then to compose myself and return to them, i was so proud of carrie and the boys and the way they conducted themselves with such a tragedy.
Charlie changed me in a way i can't describe, he changed everyone and will continue to change the way things happen in the future so other people that go through this horror will have the support that they need when they need it.
Thanks for reading i am a man of few words and still continue to be proud to be known as Charlie's grandad clive

Thursday, 12 June 2014

Throughout our lives we have people that are very special to us as individuals. They make our lives richer for having them in it and make life interesting and worthwhile.

I have been very lucky to have had someone come into my life who has not only been special to me and made a massive difference to my life , but has made an enormous impact on hundreds of people and is still making a difference.

                                                       My Grandson Charlie

Charlies legacy will live on for years to come, he will make a difference for hundreds of bereaved parents and families and will influence and change the provision of bereavement support. Although Charlie only lived for 19 minutes he has been able to change the lives of others for the better. He has made professionals look at how they provide their services, NHS bosses have had to answer questions about the lack of bereavement support and he has raised the profile of 'Potters Syndrome'. Pretty impressive for one special little boy.

We will never stop fighting for improvements in bereavement support and we will open our support centre in Charlies name.

Tuesday, 10 June 2014

We soon realised that someone needed to go and let everyone in the reception area know what had happened. Waiting for any news were Gary (Carries dad), Clive (Carries step dad), Shane (Brother) and Nathan (Brother). I said I would go and tell them all, I felt like I needed some air as well.

On the way out of the delivery suite the receptionist came round to me from behind her desk. She gave me a big hug and said she was so sorry for our loss. Her kindness meant so much and that hug was really needed.

I decided to walk down rather than take the lift, I think part of me was wanting to take the longest route as I didn't know how I was going to start telling them.  I came round the corner and saw them all sat there, they all looked over and I couldn't find any words at first I just looked at them and shook my head. They all knew what it meant and they all stood up. We walked outside, no one really talking to start with. I explained to them all what had gone on and kept saying how much of a fight Charlie had put up. I remember us all giving each other hugs but I cant remember what was said.

All of us went back up to the delivery suite and as we walked back onto the ward. Gary stopped when he got to the door and had to step back for a moment to compose himself, he said he needed to be strong for Carrie. Shane and Nathan both looked shell shocked and a little confused. We went into the room but I came back out to let the others spend some time with Carrie and Charlie. The room was only small and it felt right to give them some time. I had had the privilege of seeing Charlie come into the world.

Once all the medical staff had come out of the room we were all able to be in the room. We all spent time cuddling Charlie and Carrie.

The staff on the ward were really kind and kept asking if there was anything anyone needed. They explained to us that there was a special suite attached to the delivery ward called the 'Rosemary Suite'. This was an area with individual rooms for families whose babies had passed away or were born sleeping. We were told as soon as there was a room available we would be able to be moved round. It wasn't until later that we realised that this had meant that there were already families in them who had lost a child.

Time seemed irrelevant and hours blended into each other. I think we were all on automatic pilot and didn't know what to expect or what to do. At some point during the early hours of the morning I remember driving out to tell Bradley (Carries younger brother) the news.

Watching other people go about their normal things seemed strange. I felt like they should all know and should be doing something different. I don't know what I thought they should be doing but it didn't feel right that they were acting normal.

Monday, 9 June 2014

29th December 2012 04.11 am, a date and time that I will never forget.

After a very difficult and emotional labour Charlie made his entrance into the world.

The room seemed to be full to bursting with medical and nursing staff. They quickly whisked Charlie over to the incubator and started to give life support measures. We had been told that they would assess Charlies lungs first and if they were developed enough  they would be able to ventilate him and this would increase his chances of survival.

I remember standing there willing his little body to keep on fighting and to give us a sign that he was there. At the same time i kept looking over at Carrie as she was still being given treatment by the Drs. I tried not to cry but seeing my grandson come into this world and then watching him give such a fight to survive proved too much. It was a very strange feeling, I felt so proud of Carrie and was amazed at watching Charlie being born but I was also feeling immense pain inside as I didn't know if he was going to make it.

I kept hearing myself saying 'come on Charlie, you can do it'. I was looking at all of the staff trying to see if i could make out how he was doing but things were so busy.

I then remember one of the doctors coming over to us, she wasn't smiling, she spoke calmly to Carrie and said that Charlies lungs just were not strong enough. She said they would make Charlie comfortable and bring him over for Carrie to cuddle him.

Her bravery and calmness at hearing this still astounds me, she just wanted to hold her son. Charlie was bought over wrapped warmly with a little white hat on his head. They placed him on Carrie and just at that moment he opened his eyes. It was as if he knew he was now safe with his mummy and could relax.

At 04.30 am Charlie passed away safe in his mummy's arms.

Sunday, 8 June 2014

Charlie wasn't supposed to make his entrance into the world until February 2013 but he had other ideas.

Just before Christmas day Carrie began to get pains across her stomach, we all thought it may be Braxton Hicks. On Christmas Day Carrie joined us for dinner and she said that the pains were definitely becoming more regular and more painful. Carrie made a couple of visits to the maternity assessment unit at St James Hospital and was eventually transferred to the LGI as they had an intensive care cot available for Charlie. On the 28th December things had settled down a little and  the staff were getting Carrie ready to be discharged home. They decided to give Carrie one last check and found that baby had other ideas, she was dilated to 8 cm.

I remember getting the phone call to say she was 8 cm and being moved to the delivery suite. I have never driven so fast along the motorway. We were living out at Oxenhope and my only thought was that I needed to get to the hospital as soon as possible. The drive seemed to take forever, and along the way I think I went through every emotion anyone could feel. Luckily there wasn't much traffic on the road.

Throughout the pregnancy I think we all put the birth to the back of our minds, I know I did, as facing the birth meant facing the fact that Charlie may not survive. Whilst he was safe inside Carrie I could almost allow myself to get excited about becoming a nanna again. Now driving along I began to cry a little and wondered if I would be strong enough to help Carrie through this. As soon as I arrived at the hospital I knew I could, If Carrie could go through all this and be so strong then I had to as well. Me and Carries mum, Sam, were to be the birth partners and I think we both helped each other through it as well as Carrie. Surprisingly the room was not filled with sad faces or tears, we all smiled and had little jokes. I think this was our way of getting through it and making it as positive an experience as was possible for Carrie.

Saturday, 7 June 2014

Hi my name is Ruth Curtis and I am Charlies nanna. The last 18 months have been a very strange mixture of emotions. We went from feelings of excitement and anticipation to desperation and overwhelming sadness.

I remember vividly going to to the scans with Carrie, and her not wanting to look at the screen until one of us had told her there was a strong heart beat visible. Each visit was a roller coaster, my own heart would beat so fast waiting to see the image on the screen and eyes frantically looking for that little flicker of Charlies heart. Once I had seen that little sign of life I would relax slightly and would start watching the sonographer take all the measurements, watching her face for signs of anything positive. I remember at one scan Charlie was grinding his gums together. The picture was so clear and you could see every movement. I sat there thinking how can he be such a poorly little baby when he is showing such signs of life and determination. Because the Drs had always told us that the outlook was very bleak I tried each time to not let my hopes rise but seeing that little baby put up such a fight made me think maybe he could do it.

Throughout the pregnancy Carrie was amazing. Although she was only 19 and this was her first child she showed maturity beyond her years. She was so brave and determined to give Charlie every chance she could. She researched the condition on her own and knew a lot more about the condition and the odds than any of us ever realised. Her motto throughout the pregnancy was 'while he has a strong heart beat and trying to beat the odds then she would try her hardest to give him every chance'. Watching Carrie deal with everything was inspirational and even now makes me get goosebumps with pride.

Friday, 6 June 2014

august/sept 2012
Today my daughter and i were returning to hospital , upon arriving we were in a waiting room, now don't get me wrong, i understand there cant be separate waiting rooms for everyone , but sitting there knowing that my grandson has a problem surrounded by pregnant ladies, who at any moment looked like they going to give birth kinda made me feel a little annoyed, what seemed like an eternity we were sent to see the consultant who preformed a scan and then his face said a thousand words turning to my daughter he said your baby we think has potters syndrome it rare but happens, your baby's kidneys are not formed properly so its not passing urine which means it can not produce amniotic fluid with out this fluid growth is limited the baby cannot stretch, lung development is compromised leaving them with very small lungs which in turn means the baby cannot breathe, Charlie's heart was also on the wrong side.
The consultant gave carrie options but the main one was to abort this pregnancy there is no hope, carrie refused and i supported her a week or so ago we were excited planning a life, planning her child's future, i fetl totally out of my depth the only thing i new was that research and supporting my daughter was all i could do, carrie was told weekly scans were needed but the the likely hood is that one week she would come and her son would have died  like most pregnancy's as time goes on you feel the kicks but with a potters baby as the fluid is to low there is little chance of feeling him kicking, i think we actually all left the hospital in shock we had no idea what lay ahead, getting home seemed to take hours in fact probably 30 mins and we took to the internet and searched potters syndrome seeing my daughter so distraught broke my heart i new i had to be strong for her and for my grandson and what seemed like a river of tears carrie felt Charlie kick, so might not mean to much to other people but it gave us hope that hang on he not giving up why should we, every one should have something to hang on to and carrie's words were while Charlie has a heartbeat and he's not giving up neither am i,, i was and am so very proud of carrie at 19 she displayed strength. courage and maturity beyond her years, this mother was fighting  for her child's life and we prayed on daily basis that Charlie continued to fight to.!potters-syndrome/cgfi

Thursday, 5 June 2014

Starting this blog has been quite difficult as a family we feel it something we wanted to do we grieve together but we also grieve as individuals each week we will take a turn blog our thoughts and feelings 

Losing a baby is one of the hardest most cruellest most single heartbreaking thing that can happen to a mummy or daddy also the knock on effect of other children, grandparents, aunts. uncles i could go on but the whole family will be effected, the loss is immense, it steals your future your hopes and dreams, Charlie is my grandson and my name is sam i will be writing this week.
August/sept 2012..
I remember the time well my daughter telling me she was pregnant exciting times we sat and talked about her plans, whether she would have a boy/girl and how many weeks she thought she was, working out dates, this baby would be my 3rd grandchild i felt so lucky, Carrie is my only daughter as i three son's two older than Carrie one younger, we set about making doctors appointments and waited, a first scan appointment came and we had to wait 3 weeks time dragged but we occupied our time picking out nice clothes which once we new the sex of the baby we could then buy them all, the scan day finally arrived up early ready to go, heading to  the hospital was exciting, my family was expanding i never new that the next 2 hours would change my life forever, Carrie was nervous after all it her first child i told her things will be fine, after all it just a scan, words which will probably haunt me for the rest of my life, we arrived in plenty of time and waited for Carrie to be called Carrie-ann we heard we jumped this is it boy/girl as we watched the screen the lady scanned and then kept scanning then said how many weeks do you think you are Carrie replied around 8, there was no smile from the lady she said i think more around 18 and i need to speak to someone and left the room, i tried to reassure carrie, after what seemed like forever the lady retuned and explained that there seems to be a problem looking at the kidneys or lack of them and we was asked to move to another room, we were greeted by a head coordinator  who said we would need to return to see a specialist the next few days i did get quite annoyed not knowing what the problem was, she said in matter of fact way that there is no way this baby would be born alive and if it made it to full term which was unlikely it would be stillborn, to be fair we all went into a little shock but the anger of 1 calling my grandchild it and 2 the look of devastation on my daughter's face, i don't think i took on board the seriousness of the situation, maybe i didn't want to, i did my best to try and comfort my daughter, saying lets see what the doctors say, we left the hospital not knowing what the future held 
Charlie Arthur Curtis
Died aged 19 minutes

we have just celebrated our 1st birthday as a charity, in normal circumstances a birthday would mean just that a celebration, to us it means three things,

(1) Yes we feel we have achieved a lot in a year from talking with the Leeds east south CCG to talking with NHS bosses to newspaper interview's to radio interview's, we took a walk from Leeds to Nottingham over 66 miles in 24 hours raising important funds towards the building of Charlies-Angel-Centre,

 (2) The far most important one is we realised we are not alone and the bereaved parents and families over the country that we have come in contact with from Emails and social media learning of there loss and struggle when they have lost son's or daughter's, it also confirmed to us that our bereavement centre is needed and we will get there and our aims of helping other family's is so important to us,

 (3) From the moment we found out Charlie had a rare syndrome and was unlikely to survive our lives changed forever, people who had been in lives for a long time but also people who we new as acquaintances surprised us, some very close friends became distant as if we had some contagious disease, avoiding us at all costs then we had people who we hardly new offering there support, fractured friendships became the new thing, it taught us a lot about people and how selfish and cruel people can be, but on a brighter note along the way  we made new friends, new support networks, people who take us for what we are and support us in whatever we do, so thank you so much to those people whether it was though Twitter/Facebook/email/ text message or phone call because on some of those days you literally saved our lives

Charlie's mummy's story told by Ruth Curtis the importance of this video shows that bereavement services in Leeds is very poor, the service needs a complete overhaul, every bereaved parent should have a after-care plan in place when they leave hospital after losing a baby.