Born December 2nd, 1997
I was 19 when I discovered I was pregnant and 20 when my first daughter was born. It was a straight forward pregnancy, although when I went 2 weeks past the baby’s due date I was induced and had my waters broken. Several painful hours later my daughter was born.
I had seen plenty of newborns before but I immediately thought my daughter looked very different. Her face looked so puffed and swollen and her eyes were like tiny slits. Not that it mattered one bit, or made an ounce of difference to the love I felt for her. It did however set my mind a little on the verge of unease. The first night in the hospital with her was horrific, while other babies slept and fed and cried a little my baby screamed and screamed until she was choking on her saliva, then she’d go limp and be asleep but only for 10 or 15 minutes at a time. I was SURE she wasn’t like the other babies. I cried and at one point begged for a midwife to stay with me but they were all too busy. I felt absolutely helpless. She wouldn’t feed properly, she kept choking on excess saliva and had almost foamy bubbles coming from her mouth, she was also strangely jittery and her jaw would often quiver. I was also very concerned at her heart rate, sometimes her colouring would be almost a bluish purple. I was a first time mum and knew nothing about babies but I just knew this wasn’t how she should be.
Doctors and nurses told me she was fine though, a healthy baby. They conceded that her heart rate was quite fast but explained that was common in newborns, as was having some mucus in their throat etc. So I took her home thinking I was just a terrible Mum because I couldn’t stop my baby crying like the other mums had been able to, nothing worked. I was paranoid as she slept and I couldn’t bring myself to sleep at the same time as her as I was terrified she’d start looking that strange colour or choking on her saliva.
When she was 6 days old I laid her in her moses basket near the xmas tree so she could see the lights and I answered the door to the midwife. The midwife sat beside me on the sofa and I started to let out some of my nagging doubts again about my daughters health, she turned to look into my daughters crib and that’s when it happened. Paige went into heart failure, I think at that moment in time the bottom just fell out of my world. I have such sketchy memories of what happened next. I know we rushed her straight to the doctors surgery just 2 streets away where all the doctors flew out of their consulting rooms and my doctor who was lovely began some sort of resuscitation procedure while the other doctors looked on in horrified silence. Next I was at hospital in Salisbury being told it was a suspected hole in the heart that had caused this and we were rushed to the cardiology dept at Southampton Hospital.
Several hours later we were called into a small room with some doctors with very grave faces. People poured cups of tea and I heard they’d consulted with Great Ormond Street and it was a confirmed vein of Galen malformation. Then I heard added to that my daughter had extensive global brain damage and finally that she would not survive. It was so surreal I can’t remember looking anyone in the eye, I do remember thinking nothing else life could ever do to me would ever or could ever hurt this much again. I took very little interest in what anyone said which maybe is why my memory isn’t so good, all I wanted to be was with my baby.
The next day I remember staring out of the hospital window at some snowflakes that had just started falling as her christening was performed by her cot side. Paige was then being tube fed and had been put in an oxygen head box and wired up to various monitors. Some nights I slept in a parents room, some in the soft play area in the playroom on the ward, and some just in the chair by her cot. I will say that the nurses there were some of the nicest people that I have ever met. A few times as Paige’s stats dropped and things happened it looked like her body was giving up, but whenever I then held her, her stats would start to improve (not uncommon I was told) and people would relax a little again. She had been put on medication to control the heart failure and a couple of weeks passed. Paige continued to lose weight and I bought smaller and smaller baby grows from the hospital shop. She was being tube fed but had terrible reflux and often the mix would fly back up the tube. She shrank so much due to most of her baby weight just turning out to have been fluid. Explains why I thought she looked so very puffed up and swollen at birth. She went from 8lb 2 to at one point to just 4lb I can’t ever look at her newborn photographs I had of her because they now make me think I should have yelled harder that she wasn’t normal, I should have done more, and maybe the VGM could have been detected before she went into heart failure.
Anyway the day before Xmas eve Paige came home, mostly because I pushed to be allowed to take her home, if only for a short time. I now realised the fact I’d not been able to comfort her and stop her crying in those first few days wasn’t because I was a terrible mum, it was because she had been so poorly and obviously I would have said in so much discomfort.
After a few weeks we went to see Dr Taylor in GOS and Paige’s condition was properly explained and I saw her MRI pictures. I could see clearly how the prognosis could not be good for my daughter, just from the amount of brain damage she had sustained. It looked likely that if Paige did survive her quality of life would not be good.
We returned home on borrowed time. Some months later I tried Paige with drinking from a bottle and she took to it. She could only feed for a short spell at a time as her body found it exhausting. Slowly she began gaining half an ounce a week in weight.
At around 3 years it became evident that Paige may never sit unsupported or walk (although we only gave up on trying to get her to walk last year after it became a physical impossibility for her). I felt she had a good understanding of language though, even if she was at that time unable to talk herself. At around 4 years she came off the medication for her heart as her heart had began coping with her condition.
Later when Dr Taylor left GOS and Paige was then put under the care of Prof Neville surgery was suggested to us. I sought Dr Taylor out though (she was then at the Cromwell) and sent plates of Paige’s last MRI to her for a second opinion. She confirmed that there had been very little change in Paige’s brain and that as her heart was coping well that her opinion on surgery not being the best route for Paige remained the same as it always had. After much thought I decided against the surgery. I was then referred to a more local Neurologist, Dr Fenella Kirkham. She also thought though that Paige should have surgery. I declined again. My thoughts were that it would be best to do an MRI once every 3 years to just keep watch on the aneurism and blood vessels and if at anytime there appeared to be any changes then maybe that would be the time to re think the surgery option.
I have never heard from a neurologist since however and Paige is now 12!
I feel very much that because I declined surgery that they have washed their hands of my daughter when I simply thought monitoring would be the sensible way ahead, they clearly did not agree. I have not pursued anyone however as I am cautious and would not want to be pushed down the surgery route unless it was going to be necessary.
With my daughter the brain damage that is done can never be ‘fixed’ and as her heart is now functioning totally normally and she is despite having quadriplegic cerebral palsy a very healthy and happy little girl I feel the risk of any surgery may outweigh the benefit to her. She can now talk and is very bright, she has the mental age of around 4/5 years but considering her brain damage it is extremely good and better than I could have ever hoped for. She has had one seizure when she was 8, she recovered well though and has been on epilim since and has thankfully so far had no further episodes. She had to have an operation on her legs last year due to muscle tightness but has had no other sort of surgery or surgery as a result of the aneurism.
I am not aware of any other children like Paige that have survived and are doing well despite having had no surgery, embolizations or shunts etc. I would love to come across another child like my daughter, who had not been operated on but I am not sure if that will ever be the case as my daughter was diagnosed 12 years ago now and things have changed a lot in the world of medicine since then.
Today though my daughter is happy and well and those are the two things that matter most to me, she now also has 2 sisters and 2 brothers and despite her physical disabilities, she always wakes up with biggest smile and I couldn’t ask for more. We have no idea what is around the corner with Paige but maybe somehow that’s a blessing as it allows me to just keep moving forward with life in the normal way as much as I can.