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 25th 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 27th 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.
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