My Heart story and the Launch of my blog

Okay, the time has come. Im launching the blog !


To go with the launch, and to get the ball rolling on this heart project im trying to get started, I felt like I should share my story with you all. Kind comments only, any rude, or nasty comments will be deleted and you will be blocked. Thank you :)


Here's my story, written by my mum, being just 9 months at the time of my operation, I cant describe the experience myself. Its a long story, so make sure your comfortable, with a can of coke and bag of revels. 


Anastasia was born by Cesarean section on 11th February, 1991, our second child. Already having a son, two year old Jesse, we were delighted with our little girl. At three days old I overheard the doctor telling two students she had a heart murmur, it was only when I created that he decided perhaps it was more important to tell me rather than them. We were assured it was a small hole which would close within six weeks so we were not overly worried. I left hospital after five days so I could spend some time with my mum who was emigrating to Australia on the 3rd march. One week after Anastasia's birth Simon was called to his parents house to see his father who was very ill. Sadly he died that evening, so Simon's side of the family's first introduction to Anastasia was at her grandfathers funeral. Then we had a different kind of goodbye, the hardest thing I had ever had to do in my life, or so I thought at the time. I said goodbye to my mum who was going to join her new husband in Australia. I was distraught and shut myself away from everyone but things got worse. Simon was made redundant from his building site and Anastasia's hole did not close up as they had so confidently predicted.


I had a baby who was a hopeless feeder - My fault they told me, stress, which made me worse.She puffed and panted whenever she was fed, was always dripping in sweat and lost weight constantly. On being admitted to Poole hospital, by myself at 3 months old, I was told by the consultant paediatrician mr cogwell that ' I was small so what did I expect'  They also sent a letter to my health visitor saying I was a single parent and clearly couldn't cope with a second child, what they thought simon was I don't know.


It was only because we had friends whos son who had heart surgery and they gave us the 'heart children' book, they told us to ask for an echo cardiogram, and because I have a big mouth, we managed to get refereed to Southampton general.I insisted that I wanted an echo even though they insisted it was not necessary. If it wasnt for friends sharing their experiences and pushing me to do this, I would have believed the so called experts at poole and could have possibly lost our daughter.


I eventually got to Southampton general on the 16th july and was told ' oh its nothing, the hearts so loud but we will do an echo anyway' Minutes later, I was called into an office and told Anastasia would need open heart surgery, but would have a catheter first involving a two night stay. The first thing that flashed through my mind was that I couldn't leave my son, Jesse. It wasn't untill later that evening everything started to sink in, I told Simon so matter of factly, as if she was having her hair cut ! I guess it was my safety valve shutting it off.


Anastasia went for her catheter the first week in September, 1991. We were told by Dr.salmon that she had fallots and we would hear when her surgery would be, and that it would be before Christmas. Now is the time for you to expect people to be there for you, to be a shoulder to cry on, a listening ear, phone to see how you are, or just treat you like normal, but no. Many people we knew did the exact opposite, leaving me feeling hurt and angry, how could they do this to us, on top of all the worry we already had. We need everyone to be there for us, not just the few amazing people that did stand by us, through thick and thin,( thank you, you know who you are.0
We had an appointment with Mr Lamb (surgeon) in October and he gave us a date for surgery - 4th November 1991.


All this time I used to write to my mum in Australia and pour my heart out , but whenever she telephoned I tried to be cheerful and very positive, but one Saturday afternoon she rang and caught me on a bad day . I was on my own and very low , I just burst into tears and said how frightened I was and I needed her etc. The problem was my Mum was now living in Australia and had no money but unknown to her I was days away from exchanging contracts on the sale of her flat , which I had been trying to sell since Anastasia was born . A few days later I telephoned her to say I had sold the flat - which she was overjoyed about and thankfully it was one less thing for me to worry about. the next call i had from my mum was "how would you like us to be there for Anastasias operation?" "we arrive on 31st October"  "great news " all my friends said , but I felt nothing , how could I be excited, every day that bought my mum nearer bought my daughter's possible death nearer. sorry for sounding dramatic but that was how i felt.
When mum and Bob arrived the day before we went into E1 (now called Ocean ward) , I was horrible. I just said "hello" as if they had come twenty miles down the road not half way round the world, and I treated my mum awful snapping all the time (sorry mum) but I was so scared I could hardly say a word to anyone.
We went into E1 on Friday 1st November, had all the tests etc , signed the consent form..... and came home on Sunday , Anastasia had a throat infection.I felt very sorry for the poor doctor who had to tell me . Back in three weeks they promised . So I isolated us for three weeks , sent my mum away , no playschool for Jesse , no visitors , no trips out , NOTHING. It was sheer hell but I was determined she would not catch anything else.
Three weeks later on Thursday 21st November the telephone rang non stop with Friends wishing us well , then about 9-30pm the phone rang and Simon answered he cam upstairs to tell me it was Mr Lamb 
"saying tomorrow was a no go as there was no room in CITU" At first I  just laughed then i realised he was serious . I was hysterical at this point ... I didn't want her to have the operation , but i also wanted it over with . We were promised the following week .
In the meantime we received a call from Simon's cousin who lived in Canada but had been travelling Africa , he was in London and wanted to visit us . Not wanting to deprive Simon of the opportunity to see his cousin i begged a friend to put him up for the night . So Thursday night Simon and Wayne got to go on a good old British Pub crawl and Friday morning when we went to the hospital Wayne came here to stay . talk about a complicated life.
So finally we were told on Sunday  1st December that Anastasia would be operated on first thing in the morning . Third time lucky . I could have jumped for joy ( not the way you expect to feel about your child having open heart surgery )  I telephoned a long time friend to say it was going ahead and anyone could visit CTITU only to be told she wouldn't be able to make it tomorrow or at all as it turned out. I phoned another friend and told her the same, it was really a plea for them to be there, I wanted friends to see what we were going through. My friend said, without a doubt, I will be there. Friends like her are very rare and treasured which I hope she knows.

Sleeping was very difficult that night, I just wanted to hold Anastasia all night long. Simon arrived early in the morning just after I had bathed her. She had her pre med and we carried her down at about 8.30 am. Simon said goodbye at the dreaded red line but I carried her through to the anaesthetic room where Dr. Abbott put her to sleep in my arms then asked me to leave. I said earlier saying goodbye to my mum was the hardest thing I had ever had to do, but I was wrong. Leaving my precious daughter that morning was the hardest.


The happiest and most memoral moment of my life was when I first saw her in CTITU. It didn't matter what she looked like, she was alive. It was a difficult time when Jesse, who was then two and a half year old, visited. He was a horror ! I shouted at him then cried when he left because I felt so awful. In fact, I shouted at everyone.


Anastasia left CTITU after two days but was wired to a pacing machine as she had had complete heart block during surgery. She cried non stop day and night, especially if a doctor looked at her. She came off the pacer five days post op and left the hospital 8 days post op.
We made some lovely friends on E1 and had a Reunion the following May. It was very nice to see five healthy children running around, I also had the first of many telephone calls to Angela Coxon now Angela Cressey.
Anastasia still cried non stop when we came home, someone had to stay up all night pushing her in her pram. Two trips to the GP later they discovered she had laryngitis and pharyngitis. Wouldn't you cry ?


We celebrated Anastasia first, very special, Christmas with us feeling joyful even if she didn't. Four days later we said goodbye to my mum again, this time we wouldn't see her for 18 months.


Below are some recent photos of me and my update, 20 years on.


Okay, back to me, Anastasia ! So I guess all the parents reading this want to know what its like being a 'heart child' To be honest, for me, it was easy. I only went to hospital every 6 months, and it seemed like an adventure. I even took my dolls with me to have ecg's. I guess i was lucky, I have never had to have any more surgery and wont for another 10 years or so. I played sports at school, even though I hated it, I learnt to swim from a young age, which as far as I can remember I enjoyed and I went to Gymnastics, which, I think i was terrible at.


School, on the other hand wasnt so easy. In fact, it was terrible. I was bullied from junior school all the way through to year 10 when I eventually dropped out at the age of 15 after countless meetings with school, social workers and many other 'important people' I disliked. I was sent to, what I can only describe as a naughty school, in Christchurch. I lasted just a few days, in my eyes I didnt belong there with pregnant teenagers and boys with tags on and asbos. I left with just 3 GCSE'S.


A few years later I did a years art course at college, which I also hated. Im an artist already, a succesfull one, so I guess I didnt like people trying to change my style and make me do things I didnt want to do. Thats when I decided to go Travelling. It started off with a small trip to Australia, but soon my plans expanded and expanded. My trip was 9 months in total, visiting Australia, Singapore, Thailand, Vietnam, Cambodia, Laos and Malaysia. I had the most amazing time and the only thing my heart problems kept me back from were scuba diving. I managed to abseil into a 30m deep dark cliff perfectly fine !


I drink, I dont smoke. I party, I ride my bike, I constantly travel. I have a good time. My heart never stops me from doing things, so heart mums reading this, there are some positive stories out there. The thing that does stop me, and hold me back, is my mental illness. Some of you reading this, may or may not no about this. At the age of around 13/14 maybe I was diagnosed with post traumatic stress disorder and depression (from the bullying and problems at school, absolutely nothing to do with my heart problems and surgery as a baby) 


As a result, I dropped out of school, as I said above and I dont have what some people call a 'normal job' To me, my job is more than normal. Its amazing. I do what I love, I paint large abstract canvas's, sell them and take beautiful photos. And get paid to do so ! Going out and getting a job may be a simple thing to any other 21 year olds, maybe even exciting, but for me, its the total opposite. My depression rules my life, and I beleive it always will. Im absolutely obsessed with food, as its the only thing I can control. I have just returned from a 5 week trip in America where I had a fantastic time, so I do still have my freedom :)


This weekend gone I celebrated my 21st birthday with my wonderful parents in London. 

Please feel free to talk to me, about anything I have mentioned in my blog.




anastasiasdesigns@hotmail.co.uk