Chat – 01 August 2019

(Michael S) #1

I spent 18


hoursa day


wit hher,


woresterile


clothing


Health


Extra


Z


ippingupmy
full-lengthhospital
gown,I pulledthe
maskovermy
noseandmouth.
ThenI slidplastic
glovesontomyhandsand
walkedintotheairtightroom.
‘Hello,littleone,’I smiled,
lookingatmydaughter
Arriella,3 monthsold.
Shelookedupatmewith
herbigblueeyes,kicking
herlegsexcitedly.
I longedto reachoutand
gentlystrokethesoftskin
of herlittlearm.
Kissherchubbycheeks.
Butinstead,allI could
dowasgivehermybiggest
smileandblowhera kiss.
Becausejustonekisson
hercheekcouldbedeadly...
It wasApril 2018 and,ever
sinceArriellahadbeenborn,
she’dbeenplaguedwith
coughsandcolds.
Thenshe’dbeenstruck
downwithpneumonia
anda bloodinfection.
Hospitaltestshad
finallyrevealedthatshe
hadseverecombined
immunodeficiency(SCID).
It meantthat,likeJake
Gyllenhaal’scharacterin
the 2001 filmBubbleBoy,
shehadnoimmunesystem.
Thatfilmwasthefirst
thingI’drememberedwhen
Arriella’sdoctorhadbroken
thenewsdaysearlier.
I’dheardhowthefilmwas
basedonanAmericanboy,
DavidVetter,whospenthis
WORDS:

FRANCES


LEATE,


CHARLOTTE


NESBITT.


PHOTOS:


CATERS


NEWS


AGENCY


It wastorturenot beingable


tocomfortmy poorlybaby
Cassidy-LorenAndrews,28,Mansfield

20


KILL


lifeina sterile chamber to
avoidinfection, before sadly
dyingatthe age of 12.
‘IsArriella going to die?’
I hadasked the consultant,
reaching out to find my mum
Diana’shand.
‘I don’t know,’
he’dreplied.
Mylegs had
turnedto jelly.
‘Howcan this
behappening?’
I’dsobbed.
Thedoctor
hadexplained
thatArriella’s
onlyhope was
to havea bone-
marrowtransplant.
‘Tohelp her body develop its
ownimmune system,’ he said.
I wastested, but sadly
I wasn’ta good match.
So,while

we waited for a donor match to
be found, Arriella was kept in
a sealed room at Queen’s
Medical Centre, Nottingham.
Pumped with antibiotics to
fight infections and kept away
from life-threatening germs,
a tiny window was her only
access to the outside world.
I’d watch the sun shining
through it onto her face.
That was the only way she
could experience daylight.
I spent 18 hours
a day in that room
with her, wore
sterile clothing.
And, while I was
able to bathe her
and change her
nappy, I had to
wear a mask and
gloves at all times


  • I couldn’t even
    have a proper
    cuddle for fear of
    transferring potentially deadly
    germs to my precious girl.
    I’d planned to do so much
    with her during my maternity
    leave from my job as a nurse.
    Relaxing walks in the
    park, trips to the zoo...
    Although I was a single
    mum to Arriella, I had a big
    family back in Mansfield,
    Nottinghamshire.
    I’d envisaged myself
    proudly passing Arriella
    around uncles, aunties and
    cousins at our gatherings.
    Watching her getting
    covered with kisses...
    Instead, our loved ones
    could only see my baby
    from the photos and videos
    I sent them on my phone
    from the hospital.
    Just a week after her
    diagnosis, Arriella was
    transferred from Queen’s
    Medical Centre to Great


Ormond Street
Hospital in London.
She was put in
another sealed room,
and I slept beside her.
Feeling isolated
and trapped, I wished
we could be outside
in the fresh air.
‘You’re my girl in
a glass house,’ I said
to her, sadly.
Finally, in May
2018 the news we’d
hoped for came...
‘We’ve found a bone-marrow
match,’ the doctor smiled.
But then Arriella developed
a virus and became too weak
for the transplant.
It was agony to see her
crying in her cot.
There was nothing I could
do to comfort her.
I felt so helpless.
Months passed, and Arriella
was so weak that all I could do
was sit beside her cot and sing
Twinkle, Twinkle, Little Star
as she gazed up at me.
Finally, in July 2018, she was
well enough for the transplant.
And, as the doctors pumped
the bone marrow through
a tube into her chest, I prayed
for a miracle.
Days later, it came...
‘She seems perkier,’ I smiled.
‘We’ve detected signs of
an immune system,’ a doctor
confirmed in agreement.
Amazing.
Finally holding her in my
arms, I felt her little heart
beating next to mine and, for
the first time since she was
born, I felt like a normal mum.
As Arriella stayed in hospital
for monitoring, I tried not to
get my hopes up.
But, within two months,
she was sitting up in her cot,

Fromthestart,
mygirlcaught
everybug going

Healt


h

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