"Here I can be a mum"
Due to the intense nursing her
three-year-old daughter Presley requires, Maria Cater, 40, says a
children's hospice is the only place the two can enjoy quality
time together
"Since having my daughter, Presley, 3, I've never really
felt like a mother, I've always felt like a full-time carer.
Most mums take being able to play a game or enjoy a cuddle with
their child for granted; but it's an extra special day for me
when I get to do that with Presley.
"Just weeks after she was born in July 2005 she contracted
Group B streptococcus, a bacterial infection that developed into
meningitis and septicaemia. This left Presley with cerebral palsy,
extensive brain damage and blindness. Unable to sit up or move her
legs, she can't communicate, is tube fed and requires 24-hour
care. Because Presley has always been so poorly we've never
been able to enjoy doing normal things together. Instead of playing
peek-a-boo and singing nursery rhymes, I administer drugs, stick
tubes down her nose and give her enemas. The only opportunity I
ever get to really be her mummy comes on our twice-monthly visits
to Keech Cottage children's hospice, near Luton.
"I'd longed for a baby for years before I became
pregnant and my partner, Steve, 35, and I relished every moment of
my pregnancy, and would excitedly talk about the baby every day.
"However, what should have been one of the happiest times
of our lives was fraught with difficulty. I went into labour seven
weeks early and Presley had to be delivered by emergency Caesarean.
She was taken straight to intensive care and, as I'd had a
general anaesthetic, I didn't see her until the next day. I was
a bag of nerves on the way, worried about the implications of her
premature birth, but when I saw her it immediately faded - she was
so beautiful.
"At 4lb 6oz she was bigger than most premature babies and
we were able to bring her home after three weeks. However, while at
home she stopped breathing and was rushed to Milton Keynes
Children's Hospital.
"While there Presley's condition deteriorated and she
was diagnosed with Group B streptococcus, a bacterium that causes
life-threatening infections in newborns, which was treated with an
intense course of antibiotics. She was in hospital for ten weeks,
during which time we were told Presley had suffered extensive brain
damage and as a result was permanently disabled. Our only
consolation was we could take her home.
"However, Presley wouldn't settle or stop crying. After
two days we took her back to the hospital, where it was found she
had fluid on her brain, which had caused further damage and a lot
of pain for Presley.
"In November 2005 she had surgery to fit a tube from her
brain to her stomach, which drained the fluid away, but she
continued to cry constantly. At our wit's end, we were referred
to Keech Cottage by the hospital.
"One of the hospice's community nurses, Angie, showed
us around on our first visit. Up until then I'd dismissed
hospices as places people went to die and I didn't want Presley
to go, but I was wrong. We loved it straight away and have been
coming regularly for two and a half years. Presley has a few
overnight stays a month and Angie comes to our home once a week;
there's also always someone on the end of the phone if I need
help or advice.
"It hasn't all been plain sailing since we started
going to Keech though. Presley has had to endure further surgery so
she can be fed via a tube and Steve and I split up in September
last year, but he's still very involved with Presley's
care.
"Presley has changed a lot in the last 18 months. Since she
has started attending Redway School in Milton Keynes and visiting
Keech, she's gone from a baby who cries all the time to a
happy, smiley little girl. She now makes baby noises and can hold a
rattle - her favourite toy - for a few minutes at a time. When I
walk into her room in the morning and see her smile, it makes
everything light up.
"The care provided at Keech is excellent. Everyone there knows Presley and she recognises the voices of the staff. While we're there they take over her care needs so I can concentrate on being a mum and we can just enjoy some time together, which is always extra special for us."
For more information on Group B streptococcus visit www.gbss.org.uk
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