Friday, 28 November 2014

We went along to the memorial service at our local church on Wednesday evening.

It was an emotional evening and it was nice to see that the organisers of the event had put out a collection box for our charity.
They have been very supportive to us and have even put our charity bands and pens in their branch for people to buy. 

There was even a little bit at the beginning of the service where the speaker told the congregation a little bit about us and what we are trying to achieve.

The service was only a short one and focused on remembering your loved ones lives and how they filled your lives with love. 

We were all then asked to go up and light a candle in memory of our loved ones. The vicar read out our loved ones names and the families could go up and light as many candles as they needed.

There was another family there that had lost their son a year ago and when his name was read out suddenly about 30 + teenagers all walked forwards to light candles. All of his school friends had come along to support the family. It was a lovely but emotional sight to see.

There was time after the service when people could have refreshments and talk to other families and give mutual support.

The service was obviously religious based and at times I actually felt a little jealous of the people who have a strong faith as they seem to find great comfort in their beliefs.

I wish I had the belief and faith that they did.

I do believe that there must be something out there when we die, but I really don't know what it is. 

Sometimes I think it would be nice to have that faith in God to give me something to be able to focus on and lean on to help me through my grief.

Then there are times when I sit and think to myself how can there be a God, how can there be anyone out there that would allow all the suffering to go on.
Surely a loving God wouldn't want to see babies and children suffer, and parents left behind to struggle through their loss.

I'm sure there are a lot of people out there that will be able to come up with an argument for this but I really can't see how anyone can say that Carrie losing Charlie was for a greater reason, and that Charlie is in a better place. 
Surely the best place for Charlie to be would be in the arms of his mum.

Maybe one day I will find my faith, I don't know, but I do wish I had something I could have to help deal with the feelings bought up through the loss of Charlie.

Tuesday, 25 November 2014

Who is Charlie Arthur Curtis?

Charlie is a very very special little boy.

He is a Son, a Grandson, a Great Grandson, a Nephew, a Cousin and now a special Angel.

He was a fighter from the day he was created to the day he left us to gain his angel wings.

He fought against illness with great vigour and showed his mummy what a tough little cookie he was. 
Through his show of strength he also gave her the strength to fight and protect his life for 32 precious weeks. 
He gave her the strength to carry on after his passing and to try and help others.

Charlie also gave the whole family strength to support his mummy through the hardest challenge in her life as well as enabling us to be able to get through it. 

We have all come through the journey as much different people, all of us changed in different ways. 
None of us have been left untouched by Charlie's presence.

Now his fight is being felt by so many more people all across the UK and the world.

Recently we have had requests for our Charlie Bear packs from the USA showing that Charlie is now going to be helping children and bereaved families across the seas.  

How amazing is it that such a small little boy can have such a huge effect and make changes all over the world. 

Tomorrow Charlies family is going to be attending a memorial service at a local church where his name is going to be read out and a candle lit in his memory. 
There will be other local families there paying respects to their loved ones that they have recently lost. 

This will be another opportunity for us to share Charlie's special life with others and to offer support to other families. 

I want everyone to know about Charlie because I feel so proud of what he achieved and is still achieving in his memory.

Charlie Arthur Curtis, an inspiration, a motivator, a little prince.

We love you now and forever Charlie. xx

Saturday, 22 November 2014

I want to share with you all the story that first hit the press about our journey. I want people to keep reading Carrie and Charlies story and realise what special people they both are.

A mother who chose to give birth to her baby despite being advised to abort him every fortnight throughout her pregnancy, sat beside his body for three days after he died just 19 minutes old. 
The baby, who was named Charlie, suffered with Potter's Syndrome, a rare condition that affects the growth of the kidneys.
Doctors spotted the syndrome when expectant mother Carrie was 18-weeks pregnant, but she chose not to terminate her son’s life as he was otherwise developing normally and had a very strong heartbeat.

Carrie Curtis, from West Yorkshire, gave birth to a son, Charlie, who died 19 minutes after birth.

Miss Curtis, 20, said: 'I wanted to give Charlie the best chance I life that I could. 
'I knew the chances of him surviving were almost nil but as long as he had a heartbeat, I wasn’t going to change my mind - no matter how many times doctors asked me if I was sure. 
'I went for fortnightly checks and each time they asked if I wanted to terminate my pregnancy. They wouldn’t listen [to me].'
Potter's Syndrome affects around one in 30,000 babies. It stunts the growth of the baby's kidneys during the first few weeks of development in the womb.  
The baby's kidneys are essential for the production of amniotic fluid in the womb.  
If there are no kidneys, there is little or no amniotic fluid which causes a condition called  oligohydramnios.


Potter's Syndrome affects around one in 30,000 babies.
It stunts the growth of the baby's kidneys during the first few weeks of development in the womb.  
The baby's kidneys are essential for the production of amniotic fluid in the womb.  
If there are no kidneys, there is little or no amniotic fluid which causes a condition called  oligohydramnios.
This prevents the  womb expanding and allowing the baby to grow and move.  
The womb remains small and in its confined space the baby's lungs cannot develop properly.  
Most babies with Potter's Syndrome are stillborn.  
In those born alive, the immediate cause of death is failure to breathe (respiratory failure) due to underdeveloped (hypoplastic) lungs, usually one or two days after delivery. 
Even if this problem is treated the baby cannot survive without kidneys.
This prevents the  womb expanding and allowing the baby to grow and move.  The womb remains small and in its confined space the baby's lungs cannot develop properly.  
Many babies with Potter's syndrome are stillborn. In those born alive, the immediate cause of death is failure to breathe (respiratory failure) due to underdeveloped (hypoplastic) lungs, usually one or two days after delivery.  
Even if this problem is treated the baby cannot survive without kidneys.
During her pregnancy, Miss Curtis prepared herself for the worst but when she gave birth to him on December 29 last year, in her 32nd week of pregnancy, she said he looked like any other newborn baby, despite weighing just 4lb.
Miss Curtis, from Leeds, said: 'It was a normal birth and I had a big team of people looking after me. 
'As soon as he came out, he was taken over to an incubator where they tried to work. But his lungs were nearly non-existent and there was nothing they could do.
He passed away at 19 minutes. 
'They wrapped him in a towel and let me hold him while he slipped away.
'Charlie opened his eyes and looked at me, which will forever be a lasting moment for me,'Miss Curtis added.
Sadly, Miss Curtis never heard her son cry, but she was allowed to spend three precious days with her son at the Leeds General Infirmary. 
She said: 'Charlie was so perfect and didn’t look any different to how he should have done. 
'He was the right size and everything else had developed normally.

Carrie was 18 weeks pregnant with Charlie (pictured in 20-week scan) when he was diagnosed, but she chose not to terminate her son¿s life

'I knew his chances were slim but I was never going to give up on him and when I got to hold him in my arms, I was so pleased that I hadn’t.
'The hospital let me stay in a specially-adapted suite where parents who have lost children can go. 
'I was allowed to hold him and be with him for as long as I wanted. At first it was hard because I expected him to open his eyes and be alright but as I was there longer, having the time with him was comforting.'
Miss Curtis now wishes to set up a charity to offer support to bereaved parents and raise awareness of Potter's Syndrome. 

Miss Curtis and her family (from L-R: stepmother Ruth Curtis, father Gary Curtis, mother Sam Key and her partner Clive Key) are hoping to raise £100,000 to set up a charity to help those who lose babies soon after birth

She claims she had little support once she left the hospital and hopes that the charity Charlie’s Angel Centre, can offer support to bereaved parents. 
'I was getting all the after-effects of giving birth but I didn’t have the baby,' she said. 'I didn’t get any visits and there was no one to talk to about it. It was very overwhelming and scary. 
'Charlie was my first child and I didn’t imagine it how it turned out. I didn’t know how long he would last and I didn’t know if I would miscarry.
'The fact that I knew he wasn’t going to live for very long when he was born meant I just had to get myself ready for that.'
Carrie and her family are hoping to raise £100,000 in order to set up the centre and offer support and help. 
Carrie added: 'We want somewhere that people can call at 2am in the morning or just call in for a coffee and speak to someone, because you do feel like you’re going crazy. 
'There isn’t  enough awareness of Potter’s syndrome - not even the doctors really know what they’re dealing with and that needs to change.'

Wednesday, 19 November 2014

What is the difference between Grief and Bereavement?

Grief is a term that describes all the feelings, thoughts and behaviour that someone goes through after bereavement.
Bereavement is a term that can be used to describe any event that includes loss – so this could mean losing your job, or a similar event, as well as the death of someone you know.

There's no right way of coping with a death, people respond to a loss in their own individual way.
The way a person responds is dependent on their relationship with the deceased, but it also depends on their own personality, upbringing and previous experiences of loss.
In particular, holidays and anniversaries act as reminders of the loss, and many people experience a  worsening of their grief at these times.
It's common for people to have symptoms that are often used to diagnose depression after bereavement. 
It's less common for people to experience a depressive illness and require treatment for this.

People need strong bonds with other people for their emotional well being, and they try hard to maintain these ties. Loss through death permanently breaks this bond. 
Grief can be seen as a person's struggle to maintain the emotional bond, while also experiencing the reality of loss.
'Grief work' is the process that a person going through grief needs to complete before resuming daily life. It involves separating from the deceased, adjusting to a world without them and forming new relationships.
People grieve not only for the deceased, but also for the unfulfilled dreams and plans for the future that they hoped to share with them.

Grief usually passes through stages, but these stages are not separate, nor do they necessarily happen in sequence.
An initial stage of shock or disbelief when it is difficult to believe that the death has occurred. This stage may last minutes or weeks.
A stage of acute anguish that usually lasts from weeks to months when feelings of depression occur. Planning the future may be difficult.
A phase of resolution after months, or even years.

Normal Grief ? 

This is a term used to describe the typical symptoms somebody experiences after bereavement.
It can include:
   disbelief, shock, numbness and feelings of unreality
   feelings of guilt
   sadness and tearfulness
   preoccupation with the deceased 
  disturbed sleep and appetite and, occasionally, weight loss
   seeing or hearing the voice of the deceased.

A grief reaction can last for up to 12 months, but can vary within different cultures. The average is probably around six months. An exacerbation of symptoms can also occur briefly on anniversaries of the bereavement and on birthdays of the deceased.

Grief and depression are different. 
It is possible to grieve without being depressed, but many of the feelings are similar.
However, about 33% of bereaved people also have a depressive illness one month after the loss, and 15% are still depressed a year later.
Symptoms that suggest a bereaved person is also depressed include:
  • intense feelings of guilt not related to the bereavement
  • thoughts of suicide or a preoccupation with dying
  • feelings of worthlessness
  • slow speech and movements, lying in bed doing nothing all day
  • prolonged or severe inability to function (not able to work, socialise or enjoy any leisure activity)
  • prolonged hallucinations of the deceased, or hallucinations unrelated to the bereavement.

It is difficult to judge who will or won't suffer depression after a bereavement. However, risk factors thought to increase the chance include the following:
  • a previous history of depression
  • intense grief or depressive symptoms early in the grief reaction
  • few social supports
  • little experience of death.

The support of family and friends is invaluable to anyone, especially at difficult times.
Sadness after bereavement is natural: it's normal to want to discuss the deceased and become upset while doing so. Expressing feeling does not make things worse.
If depression is thought to be present then antidepressants are very likely to be used.
Antidepressants will treat the depression, but they do not have any affect on the underlying grief. Untreated depression, however, makes it extremely difficult to grieve effectively.
GPs, counsellors and psychiatrists are aware of the many different normal responses to loss and are reluctant to diagnose a person as mentally ill during bereavement.
They will usually provide support to help the person grieve. A psychiatrist is only likely to be involved if the bereavement is complicated by a depressive illness.
Grief counselling helps mourning by allowing someone to work through the stages of grief in a supported relationship.
The goals of grief counselling include:
  • accepting the loss and talking about it
  • identifying and expressing feelings related to the loss (anger, guilt, anxiety, helplessness, sadness)
  • living without the deceased and making decisions alone
  • separating emotionally and forming new relationships
  • the provision of support
  • identifying ways of coping that suit the bereaved. Explaining the grieving process.

Sunday, 16 November 2014

We would really like to get some input from our blog readers regarding the subject of having another baby after losing one. 

We would like to hear how you coped with another pregnancy and what emotions you went through. 
We would also like to hear from families that have gone on to have a new edition but from another family member.

Since we lost Charlie we have had another beautiful edition to the family from Charlies Aunt and Uncle.

This was their third child, having already had two beautiful, healthy little girls. 

Although we all knew that they had had two successful pregnancies resulting in the amazing Rhiann and Amy, we were all still a little anxious. 

I remember feeling very worried on the day of their first scan.

We all knew they were heading off for their scan and all of us had asked them to text us as soon as they came out to let us know that everything was ok.

Despite knowing they were unlikely to have any problems the logical sides of our brains were not working. 

After everything we had been through we were all on edge and almost expecting to hear bad news.

It was fantastic to receive the text saying everything was going well with baby.

Throughout the pregnancy I think we all went through phases of feeling anxious and worried in case anything developed. 

When you go through a difficult and traumatic pregnancy you are then almost waiting for that bad news to drop with any other pregnancies.

As the pregnancy progressed I think we did all begin to relax a little and when we found out it was to be another little girl we felt like this was going to be the positive outcome we needed as a family.

Welcoming little Mila into the world has helped us all to heal a little, she has given us focus and shown us that things can go right.

I know that Carrie absolutely adores her 3 nieces and has often said they have given her the reason and inspiration to keep positive at times. 

When Carrie gets to the place in her life when she tries for another baby I am not sure how we will all cope with it. 
It will be natural for her to be absolutely terrified and anxious throughout and we will all try our hardest to make it easier for her.

The medical staff will definitely be monitoring her very closely and she will have her whole family with her throughout the journey. 
I'm sure it will be the longest 9 months of any of our lives but we will support each other and Carrie.

None of us know how the future will unfold and how we will react to any future pregnancies. All we do know is that whatever happens we will face it together.

We would really appreciate any of your stories on how you have dealt with all the issues that have arisen in pregnancies following a loss. 

Lets all help each other get through these difficult and emotional times.

Wednesday, 12 November 2014

Becoming a grandparent is one of the most amazing things to happen after being a parent/step parent. I absolutely adore being a Nanna and find it such a rewarding experience. I can't imagine my life without my beautiful grandchildren in it. 

The joy of having a baby around again is such an exciting feeling. There is also the added fact that you are able to enjoy all the fun times without having to deal with all the day to day tasks. 

Grandparents are able to spoil their grandchildren and look forward to being able to do this.

As soon as you are told that you are to become a grandparent you begin to prepare yourself for this new life, you get excited for your child as they prepare to take on the biggest and most important role of their lives. It is also good to know that the family line is continuing and a new generation is beginning.

As the months pass you support your child through all the changes they are going through both physical and emotional and you start to imagine what this new baby will look like and what will become of their lives. You get excited seeing the changes in your child, their tummy getting bigger and bigger. Its such an amazing feeling.

When this new life is taken away either before the birth, at birth or during the childhood years whether it is expected or not the pain is unimaginable. It is a pain that you will never have experienced and you would never wish it on anyone.

As a parent you never imagine that you will outlive your children and especially not your grandchildren so when this does happen it feels like life is very mixed up and wrong.

You want to protect your child, taking away their pain like you were able to when they were growing up and fell over.

However, the death of their child is a pain you are unable to take away, you cannot make it better and this leaves you feeling helpless. 
It is also a pain that you are now sharing with them but you don’t want to burden them with your feelings of grief. 
You feel like you have to be strong and keep your emotions in check so you are able to support your child.

Grandparents often get a feeling of ‘survivor guilt’ and would rather that they were the ones that had died and wish that they could change places with the deceased child. 

The feeling that you have had an opportunity to live your life whilst your grandchild has had this chance taken away from them makes you feel that it would have been better if you had died. 
You also experience a feeling of guilt that you were unable to protect your child from this pain.

Some professionals say that there are 5 stages of grief that people go through.

1. Denial:  – Difficulty accepting what has happened and a feeling       of numbness and disbelief. Denial is a way of allowing the pain       of grief to come in small doses.

2. Anger: - Feeling angry at the loss and the pain you and your             child is feeling.  Feelings of resentment towards other parents.         You feel that life is unfair and why were you not allowed to              enjoy your new grandchild's life.

3. Bargaining: - Once the anger eases people going through grief         often enter a stage of bargaining with God. You  often ask               “Please let me have just a little while longer with my                         grandchild”, “Now that I’m not angry let me have some more           time “.

4. Depression: - Deep feelings of sadness, loneliness, emptiness,          despair and physical ailments. People often experience                     headaches, aches, pains, nausea, weight loss/gain and sleep               disturbance.

5. Acceptance: - People going through grief never truly get over it;     you learn how to adapt to your new ‘normal’ life. Life will never     be like it was before the loss but you find that you can continue       to live again.

The stages of grief can happen in any order and there is no time limit on grief, some people will also never experience any of these stages, whilst some will experience just a few.  There is no typical reaction to grief and whatever you are feeling and experiencing is normal.

Grandparents are often overlooked during the grieving time as the attention is rightly focused on the parents of the child who has died. 

However, they are often going through double the pain as they are not only grieving for their grandchild but also feel inadequate as a parent as they are unable to take away their Child's pain.

It is important that grandparents allow themselves time to grieve to enable to them to get through the loss.

Don’t be afraid to talk about your grandchild with your child, it may cause a few tears but just remember you’re not going to remind them of the child they lost, they will never forget them. 

They may also be feeling that they have to keep their feelings and words inside so as not to upset anyone when all they want to do is talk about their child. 

It is important for everyone to remember that the child did exist and to acknowledge the pain each of you is feeling.

“If you don’t let yourself grieve you will be no help to anyone else. You must allow yourself the chance to grieve”

Sunday, 9 November 2014

Today is Remembrance Sunday, the day when we focus our thoughts on those that lost their lives and continue to lose their lives fighting for our country and our freedom from oppression.

I totally support this and wear my Poppy with pride. 
I think that our soldiers deserve all the praise and support that they can get. 
They do a job which most of us would not ever consider doing.

However I think that those of us who have lost family members, be it through war or illness, remember our loved ones every day of our lives. 

It is good to have days to give people a focus, and it helps with the raising of funds for those charities, but we should also remember that there are people out there that are constantly thinking about their loved ones in heaven. 

Today has bought together a lot of families to help support each other and remember lives lost.
I feel that anything that raises the awareness of support needed for bereaved families can only be a good thing.

We continue our drive to provide support and care for those parents and families going through the devastating loss of a baby and hope that you will all join us to raise our profile to a National and Global level. 

We want the name Charlies-Angel-Centre to be the name that everyone says when they think about bereavement support. 

Thursday, 6 November 2014

Hi Charlie,
Nanna Curtis here again. 

I'm really missing you lots at the minute. I think it's because I know your birthday is getting closer. Can't believe you would be nearly two and more than likely causing lots of mischief. 

I seem to be seeing lots of little children around at the moment who are about the same age as you and it makes me think about you even more. 
I imagine how you would be looking now and in my mind i see you playing with toys like they are. 
I'm sure you are playing with lots of other little angels and are being well cared for and loved. 

I do wish however that we could all get to give you a great big family hug and smother you in kisses. 

Your mummy is starting to think about how she would like us all to celebrate your 2nd birthday, i'm sure whatever she decides will be brilliant. 
We all like to make sure that we celebrate your birthday in style and that you would be happy with what we do.

Your Mamma Key got mummy a lovely present the other day, its a book with the pages folded to spell your name, its really beautiful. It also has your gorgeous face on the front which makes it even more special.

Your little cousin, Mila, is crawling now. I often watch her and think how you two would have been good friends. I can picture you both pottering around together and you showing her how to do things. I think you would have made a very cheeky pair.

Rhiann and Amy had a fundraising event at their school for you the other week. You would have been very proud of them. They love telling all their friends about you. 

We have had a few meetings recently with people who can make a difference to bereavement services. 
You are really making a difference and making people sit up and realise that they have to make changes. 
Every time we go to these meetings it fills us all with such pride to think that you have made such an impact on peoples lives and continue to effect the provisions of bereavement support. 

There are more and more people out there who know your name and know of your courageous battle. 

You are one awesome little man Charlie Arthur Curtis.

Love you big big millions

Nanna xx

Monday, 3 November 2014

We need your help

As part of our campaign to improve bereavement services across the UK we have been trying to get as much input from other families as possible.

We would really appreciate as many of you as possible contacting us to let us know of your experiences within the maternity and community services during your pregnancy and in the months to follow.

The more information and stories we have help us when we have meetings with the professionals. 

It enables us to give them the full picture of what is actually happening out there to bereaved families.

It can also help other families by seeing that what they are going through and experiencing is normal and that they are not alone.

We would like to hear both the positive and the negative stories, as it is always important to give a full and informed picture of what is happening.

We appreciate that it can be difficult to share your stories on an open page so if you would prefer to you can email us at 

Since losing Charlie we have had lots of messages of support and people saying that they had been through similar situations. 
It upsets us to think of other families still having to go through the pain of losing a child especially when little or no support is readily available.

We are being told that there are improvements being made to the bereavement support families receive so it would be good to hear from families that have actually been on the receiving end of this.

We want to be able to start seeing more and more positive stories and would like to think that some of them could be linked to our push for better services.

We would also like to hear any ways that you have found helpful to enable you to cope with the situation. 

The more information people have the stronger and more able they are to continue their journey through grief