As we continue with our October Pregnancy and Infant Loss series, I happen to have come across an extraordinary woman, Charlie’s mom. Carrie-Ann is an inspiration to so many because not only is she creating awareness for miscarriage and loss, but she is also bringing more attention to Potter’s Syndrome. She has broken the silence in a big way, but she has also found away to help others through his memory. Read on to learn about Charlie’s 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 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
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.
Carrie-Ann I am so happy to have electronically met you. I know without any doubt your story and your passionate cause will help so many. Charlie’s story will continue to be told and I wish you all of the success in your hope of a bereavement center. With 1 in 4 pregnancy’s leading to loss I can assure you there is a need in every city. More people like you, with passion and love behind the cause will be the reason why our next generation of bereaved parents will have hope again.