Carries story

Charlie Arthur Curtis. 

What can I say about my son who only lived for 19 minutes? Before he was born he changed so many people’s lives and even after his death he is continuing to do so.

My name is Carrie-Ann Curtis and in September 2012 I discovered I was pregnant. I believed I was approximately around 8 weeks, when in fact I had been pregnant for 18 weeks and I was totally unaware. I would be a single parent, at just 19 years old, and completely inexperienced, but I didn’t care. I knew my baby would be loved and cared for. I had a wonderful home and things were looking good. I waited for my first scan appointment and I actually began planning my future. As the scan date arrived I headed to the hospital with my mum, we talked and laughed at what lay ahead, what we were going buy, and although I did feel a little nervous, I was excited to find out when my baby was due. As the scan started I couldn’t really see much, but as the Nurse turned and said I was in fact 18 weeks instead of 8. I was completely shocked and unfortunately that was just the beginning of my nightmare.

It is one of the most horrendous experiences that no parent should ever have to go through. The nurse explained that I was approximately 18 weeks, but there was a complication, and she needed to discuss with a doctor. I had no idea what to think and neither did my mum. The nurse returned and explained that there didn’t appear to be enough fluid around the baby and we needed to speak to someone else. By now I was terrified, I had no idea what to think, or what this all meant. As awaited 3 more staff entered the room and immediately said ‘We are sorry’.  They then explained that they were unable to see any kidneys on the scan and at this point of time the fluid was too low to know any more. I didn’t understand anything they meant, or what to say, they explained that there was nothing that could be done and it was highly unlikely I would still be pregnant by the next week. The doctors explained that I could wait and see if I miscarried or they would refer me to discuss an abortion. I knew instantly that I would not be aborting my child. As there was no more information available at this time I was told to return in week’s times for another appointment. The thought that I might lose my baby so quickly was devastating, and I has no idea what to think.

The following week went so slowly. I was scared to move or do anything that might reduce my baby’s chances of survival. I was confused as to what was wrong, I honestly didn’t know what lay ahead, but tried to remain optimistic that everything would work out.

Arriving at the hospital for the next appointment I hoped to find out what was wrong with my baby, what the hospital could do and what options I had. The doctor explained that they think my baby had something called ‘Potters Syndrome’; they explained that ‘Potters’ affects the kidneys and babies with ‘Potters’ either have 1 or no kidneys at all. Meaning they can’t pass urine, and it’s the urine that creates the essential amniotic fluid that assists the development of the lungs. The doctor explained that without this fluid the lungs would become dry, causing certain death, and pushed for me to abort. I refused again, I was told all they could do was monitor me by way of scans but should remain prepared for the likelihood that the scans will only show that my baby has died.  With lack of fluid I would find it difficult to feel movement, but I was determined not to give up on my child. I asked about the sex of the baby, but due to lack of fluid they said it was difficult to say, however most ‘Potters’ babies are boys, and due to his strong heartbeat we decided he most likely was. Over the following months I researched continuously about ‘Potters Syndrome’ and found that within the last 30 years no child with ‘Potters’ had survived. However this never deterred me. My baby could be the first, and while my child still had a heartbeat I would fight for him.

Each week as scans continued and my due date grew nearer, the stress was beginning to take its toll. My friends, who I thought I could rely on, made a run for the doors. I guess they didn’t understand. My pregnancy wasn’t like most, I didn’t have the excitement of going shopping, choosing pushchairs and clothes, I couldn’t do all of the things that expectant parents do. I couldn’t do any of those things because I didn’t know if my baby would live or die. I eventually decided to buy a couple of outfits; even if my baby died I wanted to dress him and I eventually decided on the name Charlie Arthur Curtis.

I often felt that doctors had given up on Charlie; as if he wouldn’t survive therefore he was unimportant. We constantly asked for intervention, explaining we had researched possible procedures on the internet that could help, but they always said no. Doctors always seemed surprised I had made it to 32 weeks, but I never was, my Charlie was a fighter and sometimes was stronger than me, I often felt a little kick whilst feeling low.

Suddenly on the 25^th of December 2012 I started have funny pains uncomfortable pains. I wasn’t sure if it was labour and the hospital were unsure to. It was rare for any ‘Potters’ baby to reach 32 weeks and on the 27^th December they decided to keep me in hospital where a cot was reserved in the neonatal ward just in case Charlie needed it. Due to everyone being unsure, and to take precautions, a team was put in place from the neonatal unit to provide immediate care for Charlie after he was born. However they cautioned me that a still birth was highly probable. The following day I was moved to the labour ward, full of expectant mums and new parents I was overwhelmed. I found seeing all the healthy babies and happy parents upsetting and at the time found it to be inconsiderate. 

After several hours I was due to go home but as the pain got worse it was confirmed, I was in fact in labour,  I was 8cm dilated and wasn’t going anywhere. I was rushed back to the labour ward to once again be surrounded by mums having healthy babies. I prayed my son was fighter and he nor I where ready to give up.  7 hours later Charlie was born, breathing and fighting, and I never stopped praying.  But after 15 minutes of the doctors fighting to save him I was told there was nothing else they could do. The doctors passed my son to me so I could hold him during his last few minutes. Holding my son for the first time was amazing, I looked at him and all the love and emotion of the last 4 months came pouring out. He opened his bright blue eyes and looked straight into mine, then they closed and he was gone. Charlie only lived for 19 minutes. That day was a blur, I had a son, I was a mother, but I couldn’t feed him or interact with him on a level like most new mothers.

We were moved to a bereavement suite where I could spend some time with my son, I could have him by my side, I could touch him change him and dress him into a his baby grow, but this was at the end of the labour ward and in order to leave I would have to walk past the mum’s in labour, and see newborn babies. I felt trapped. Having spent 3 days with Charlie I had to leave hospital, I needed to organize a funeral, arrangements to be made; everything just seemed such hard work. Getting proper information of what I was meant to do, where Charlie would be whilst I went home, all added up and made me feel like I was starting a new battle. Was this just happening to me or where other bereaved parents having the same problems.  Losing my son was the most painful thing I have ever had to do.; I needed support, not just from family, but from professionals. Eventually even this became hard. I had to fight to see a midwife or a GP; it was almost as if they didn’t feel I needed help, I couldn’t take my son home therefore I didn’t need any assistance.

Things need to change, and fast. Research became my thing . I contacted other bereaved parents through social media and found I was not an isolated case. 32,000 bereaved parents are waiting for bereavements counselling within Leeds alone, 500.000 across the entire country. Having talked with my family we felt a bereavement centre was needed.  This centre would allow bereaved parents to access counselling and support immediately and give them the opportunity to speak to someone day or night. Because of this 

                            Charlies-Angel-centre.org.uk

Was born.

Having set up Charlies-Angel-Centre the response has been overwhelming, we have 1000’s of people getting in touch with their story’s through social media such as Twitter and Facebook, and after setting up the website we received an influx of emails from hundreds of people showing their support. We campaigned for change within Leeds NHS for better bereavement services and we continue to do so today. I have done multiple interviews and will continue to do so until we succeed in making a change. We have pushed for a review of services in Leeds and the Leeds CCG are currently reviewing their services. We are continuously fundraising for our charity, with the hope of opening a bereavement centre in the future. So far we have risen over £4000 pound. My son only had a short life, but in that time he taught me and my family so much. Charlie has and will continue to make a difference to the 1000’s of bereaved parents and families out there, who like me, have suffered in silence. Change is happening and it’s happening soon.

It doesn’t matter how small footprints are they can make a big imprint across the world.

www.Charlies-Angel-Centre.org.uk

https://www.facebook.com/CharliesAngelCentre?ref=hl

https://twitter.com/charlie29122012

Today is Pregnancy Loss and Infant Death Awareness Day 2014. 

There is a campaign for as many people as possible to light a candle in memory of all the babies born asleep or who passed shortly after birth. I hope that thousands of candles have been lit all over the world for those special angels.

There are so many families all over the world that are affected by pregnancy loss and infant death yet the level of support for them does not reflect the demand.

How can the people that fund these services see the need for improved services and not actively fight to make that improvement.

The only reason I can come up with is that they have never had to go through a loss therefore they do not know the destruction it can cause.
They have never had to see a loved one struggle to come to terms with the death of their child.
They have never had to struggle to get out of bed when all you want to do is curl up forever.
They have never experienced the feeling of complete and utter loss and despair.
They have never felt that life seems too hard to keep going on.
They have never sat and cried for their loved one for hours on end.

If they had experienced any of this they would be allocating the money to the correct services to ensure that all families going through a bereavement are given the right care and support when they need it. 

They would see that waiting lists were cut so that families didn't have to wait months just to be told that they need face to face counselling, and then get told this could then take up to 18 months.

They would increase the amount of bereavement midwives available for families to contact.

I look at the things we aim to achieve by opening Charlies-angel-centre and think why are these things not already and automatically available to bereaved families. 
If we can see what needs to be done to improve services why can't the so called 'professionals' also see that.

I am sharing my candle in memory of Charlie Arthur Curtis my beautiful, handsome grandson who came into this world at 04.11 on 29.12.2012 and sadly gained his wings at 04.30 on 29.12.2012.

What does the future hold for Charlies-Angel-Centre. 

We are now getting so close to the £5000 that we need to be able to register with the charities commission. 
Once we have that registered charity number it will open up so many more opportunities for us. 
Not only will we be able to do more fundraising in certain places e.g. supermarkets, but we will also be able to apply for more funding currently not available to us. 

We will also be taken more seriously by more people as at the moment without that number people are much more sceptical. 

It is an unfortunate product of today's society that people are much less trusting and therefore less willing to donate to unregistered charities. 

I totally understand this as there are so many unscrupulous people out there trying to scam people. I think I would probably be the same.

What people don't realise, and neither did I, is that you need to have the £5000 before you can register. 

We have been able to register as a charitable company for tax purposes but most people don't understand what that means and just see that we don't currently have a charity number.

I think the next 12 months are going to see such a lot of changes for Charlies Angel Centre. 

We hope that we will be in a position to secure premises to use as our offices and to start up our telephone hotline. 
With a charity number I think we will be taken more seriously by companies and they will be more liable to help us and offer us better rental rates and support. 

Ideally we would like to have acquired enough funds or backing to be able to open up our support centre. 

To be able to offer bereaved families somewhere where they can go any time of the day or night for support and friendship would be such an amazing achievement. 

We know from all the research we have undertaken and the information we have found out that this service is so badly needed, not only in Leeds but also country wide. 

I really think that we are in for a very exciting and productive period in our charity. 
Not only do I think that financially we will become more secure but I also think that our work fighting for better bereavement services will also see results. 

We couldn't have done any of the work we have done were it not for the help and support we have had from friends, family and our charity supporters. 
I hope they all continue to give us their support and share with us the excitement and success of opening our bereavement support centre.

Bursting with Pride

Today has been one of those days where I couldn't possibly feel any prouder of my granddaughters than I do.

Rhiann (8) and Amy (6) have always wanted to do everything they can to help with our charity work. 

They have wanted to get out there and get everyone to know who Charlie was and what we want to do in his memory. They are both very proud of their cousin.

They have done things from baking cakes to sell to putting up posters all over Leeds to advertise our fun day.

Earlier on in the year they asked their mum if they could do something at school to raise money. They wanted to do something with their friends to share Charlie's story.

What amazing little girls.

We contacted their school and asked their head teacher if they would be prepared to help us. 
She went along to visit our website and after reading our story she felt more than happy to do an event within the school to raise funds for us. She was also more than happy for Rhiann and Amy to be involved with the event.

Today the school held a non uniform day with the children donating money to come in their own clothes rather than school uniform.

We were contacted by the school during the day to tell us how much money they had raised but also to tell us how brilliant Rhiann and Amy had been.

Both girls had got up and spoke to their school friends all about Charlie and what had happened to him. They also explained what we were raising money for. 

I find it hard to explain how in awe I am of these beautiful girls. 

I find it hard enough to get up and talk in public, especially when it is about such an emotive subject. 

So for these two little girls to do this is amazing.

They told their class mates how they give their Aunt Carrie hugs and say they are from Charlie. 
Some of their school friends then started to give Rhiann and Amy hugs and told them to give them to Carrie. 
Kids say and do some special things.

When I heard what they had done it made me shed a few tears, not tears of sadness but tears of pride and happiness. 

The school managed to raise £100 today and Rhiann and Amy helped count out all this money.

We are all very grateful to the school and especially the children and their parents who donated money to us.

Potters Syndrome

When we were given the diagnosis of Potters Syndrome none of us had a clue what it was. 
We were all a bit stunned and I don't think any of us had asked the questions we wanted to ask. 
All of us went home and I think every one of us went straight onto the internet to find out exactly what Potters Syndrome was. We joined support groups on face book and found support and information from other families that had been through the same situation.

Tonight I would like to share with you information on the syndrome and what it all entails. 
I hope this can help any family's out there understand what is happening to them and hopefully answer some questions they may have.
We understand that when you are sat down in a Dr's office you don't always remember to ask all the questions you have been thinking of. 

Potters Syndrome is also known as Potters Sequence and Bilateral Renal Agenesis.

What is Potters Syndrome ?

When the baby is subjected to Oligohydramnios (low  or no amniotic fluid) and compression whilst in the womb, it results in the formation of certain features in the baby. This condition is what is called Potters Syndrome. 
Oligohydramnios may be caused by conditions such as Renal Hypoplasis, Obstructive Uropathy, Premature or early rupture of the membranes and Cystic Kidney Diseases.

Potters Syndrome describes the  typical physical appearance caused by pressure in the womb due to low or no amniotic fluid. Some medics feel that Potters Sequence is a more appropriate name for the condition because not every individual has exactly the same set of signs and symptoms but they share a common chain of events leading to the same endpoint of reduced or absent amniotic fluid.

When a lady is pregnant the fetus's kidneys develop between 5 to 7 weeks gestation.
The production of urine becomes ongoing at around week 14. 
The urine is recycled by the baby swallowing it whilst in the womb. If there is a disease that impairs the production of urine causing oligohydramnios and diseases that effect fetal swallowing, such as oesophageal atresia,  this can then cause polyhydramnios.
It is the amniotic fluid that helps with the development of the baby's lungs, without it the lungs will not become fully developed (pulmonary hypoplasia) resulting in respiratory distress at birth.
This is usually the cause of most deaths from Potters Syndrome.

There are 4 classifications of Potters Syndrome:

Type l -   Due to autosomal recessive Polycyctic Kidney Disease.
Type ll -  Usually due to Renal Agenesis or Hereditry Renal                             Adysplasia. Bilateral Renal Agenesis is the most extreme                 form.
Type lll - Due to autosomal dominant Polycystic Kidney Disease
Type lV - Due to chronic obstruction of the kidneys or ureter                            resulting in cystic kidneys.

 Some of the symptoms of Potters Syndrome are :

 - Receding chin, flattened nose, low set ears and lots of epicanthal      folds.
 - Skeletal deformities, anomalies of the limbs e.g Club foot
 - Difficulties in breathing
 - Dilated ureters, poor or incomplete abdominal wall, undescended     testicles, distended bladder
 - Cardiovascular defects such as Tetralogy of Fallot, incorrect             heart positioning
 - Eye defects such as Cataracts, lens prolapse
 - Lack of urine

At the present time there are no successful treatments or cures for Potters Syndrome. It is currently seen as a death sentence. There are a few doctors undertaking research into the condition and hopefully one day they will have a treatment that will enable babies to survive.

I wanted to share with you today some of the things that people have done in memory of Charlie Arthur Curtis. We have all found different ways to honour his memory, I know none of us will ever forget Charlie but we all like to have things to focus our memories on. 
These are only a few of the things.

Amnio Infusion

Yesterday, Whilst scrolling through my face book page I saw a post added by the American congress woman  Jaime Herrera Beutler who's baby daughter was diagnosed with Potters Syndrome at her routine scan. I have read their story before but this article was looking at how well their little girl is doing now and how she is awaiting a kidney transplant from her father. 

Her little girl appears to be the only child to be alive despite having Potters Syndrome. She is now 14 months old and very cute.

How has this happened ?

In America the medical care given has to be paid for and therefore if you have the money and the ability you can get treatment. The Beutler family were in a position to be able to pressure doctors into trying the very new and unconventional treatment called 'Amnio Infusion', where fluid is injected into the uterus to try and help the babies lungs develop. This then allows the baby to be able to breathe once born and is able to survive. They will still have a lot of medical issues but ones that can be dealt with. 

When Carrie was pregnant with Charlie we all did lots of internet research into Potters Syndrome and came across articles about Amnio Infusion. 
At one scan we asked the consultant if it was an option that could be given to Carrie. 
We were told that it wasn't carried out as a routine procedure in the UK for several reasons. The main reason appeared to be the cost of the procedure. There is also a high risk of either inducing labour or terminating the pregnancy. 
I remember the consultant saying that there were only a couple of places in the UK where they had tried infusing fluid into the uterus, and they had not had any positive results. 
We asked if it was an option that Carrie could be given the infusion and we were told, NO. 
We knew it was a new procedure and risky but surely if we wanted to give it a go why were we not allowed. 
It felt like they were deciding that Charlie's life wasn't worth the effort. 

Why should money be the deciding factor in offering possible life saving treatment.
It makes me very angry that this treatment isn't routinely offered to mums diagnosed with babies with Potters Syndrome. 
For the treatment to become more successful it needs to be carried out more. 
I know not every parent would want to go through with the procedure but it needs to be offered as an option. 

I am very happy for the Beutler family and it offers hope to families being told they are expecting a Potters baby, but at the moment only in the USA. 

I hope that this procedure soon becomes available across the world and makes the diagnosis of Potters Syndrome no longer a death sentence. 

Every baby regardless of whether their parents are rich or poor deserves the best opportunity and money should not be a deciding factor on if they live or die.