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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 baby?s 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?s 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 parent?s 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 of 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.
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