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JOSHUA R’S STORY
Joshua was born on Saturday 25th
March 2000; he coped with the birth extremely well. The paediatrician didn’t know if he would survive because
he only had his brain stem. We
found out that Joshua had hydranencephaly at 34 weeks pregnancy.
I was involved in a RTA at 28 weeks pregnancy; his brain stopped growing
from then on. I was offered a
termination but refused as Joshua was kicking very actively.
He could have died after the accident but he hung on in there and fought
for his right to live. What right did I have to take that away from him?
After the birth Josh found it extremely hard, he
became jaundiced for a week and found it difficult to feed, as he couldn’t
latch on. After he lost more than
10% of his body weight we had no choice but to feed him breast milk via NG tube.
I felt an extremely strong instinct to protect him, I hated feeling
powerless. When he was well enough to go home, we were given the advice
to enjoy him while we had him and not to wrap him up in cotton wool.
That’s exactly what we did.
Our jobs took us to Nottingham and we worked
opposite shifts. We both shared the
care of our son which was tiring, but a totally life changing experience.
I never imagined the love that I would feel for Joshua.
He has taught us both so much in the short time he was with us.
A neurosurgeon told me once that everything Josh was doing was a reflex
and not intentional, he said this as Josh was smiling!
Joshua had a strong personality and knew exactly what he wanted and how
to get it. He had us both wrapped
around his little finger, little tinker. He
loved his food, especially chocolate pudding; he would smack his lips in
pleasure. I hated it when the
speech therapist told us after 6 weeks in hospital (when he was 18 months old)
that he would need an NG tube permanently because he had aspiration pneumonia.
Eating would be dangerous for him. I
felt like I has taking away the only pleasure he had in life, but I knew it was
for the best. We could give him
tasters instead, which was better than nothing.
The medical and respite teams at the hospital
were absolutely fantastic. There
were times when I wanted to scream. Every
time we saw the consultant it would be bad news and I would be in tears.
I felt like they were tearing my heart out, Joshua was my life, how could
I possibly live without him? Everyone
who came into contact with Josh loved him too.
When we took him to respite the nursing staff would squeal “oh
Joshua’s here” give him kisses and sweep him away to give him a cuddle.
He met lots of friends at respite, Tweenies playgroup and Rainbows
children’s hospice, Joshua had more of a social life than us! He was due to start school but was admitted to hospital for
the last time and didn’t make it. Joshua
would be admitted to hospital once every 3 months with chest infections.
We would take him in when he needed oxygen, otherwise we could care for
him adequately at home.
Josh started having seizures after he turned 1;
he was prescribed epilim, which controlled them well. Illness would trigger his seizures off, and during his last
hospital stay he suffered 2 dangerous seizures that rendered him unconscious for
3 days. He managed to get himself
through the 1st one, and was almost well enough to come home.
But the night before his discharge he had another dangerous seizure. The
paediatrician wasn’t sure if it was the diabetes insipidus that was triggering
the seizures. Joshua was too weak
to get through this one and his kidneys started to fail.
We had to say goodbye to our precious baby boy, we decided that we wanted
Joshua to feel the love in the room for him and we allowed the people close to
Joshua in to say goodbye before he went to sleep.
  
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