Page 20 - Daggabay Magazine Issue 9

2012…
Tiana Leigh was born 20th July 2006.
At birth she already had a breathing
problem and transferred
Johannesburg hospital at age 3 weeks,
where an emergency open lung biopsy
was performed. She was diagnosed with
a rare and life threatening disease – and
given only a few weeks to live.
Tiana was also diagnosed with severe
epilepsy and would have up to 5
grandmul seizures a day.
She remained in ICU for the first 4
months of her life and we flew home with
Tiana on full life support at 4 months of
age thanks to many sponsors helping
with medical equipment and financial
support.The CPAP machine Tiana was
permanently connected to oxygen and a
CPAP machine that blew constant air into
her lungs allowing her lungs to remain
expanded at all times. Slowly with the
help of our pediatrician,we weaned Tiana
off the CPAP and onto nasal cannulas,
only to use CPAP at night time.
She remained on permanent oxygen
24/7. At age 18months Tiana was
diagnosed with cancer –Wilms tumor.
We returned to South Africa with the
generous help of Mac Steel who
chartered a plane to fly us out and her
left kidney was removed followed by
months of chemotherapy. Every year since
then Tiana has been hospitalized with
infections and viruses in her lungs and
given anything from a few hours to a few
days to live.
In 2012, age 6 the first double lung
lavage via ecmo was performed on Tiana
which was a huge success. Thus she
came off the cpap for two years and
coped with 3lt oxygen per minute
compared to the 8lt. March 2014 Tiana
to a was diagnosed with pulmonary
hypertension another incurable disease.
Four weeks later another double lung
lavage was performed via ecmo, but this
time Tiana took much longer to recover
and spent 2 weeks in CTICU on the
ventilator and fully sedated. They also
found when doctors tried to extubate her
that her airways had narrowed and was
taken back to theatre to have laser
surgery done to reopen her airways.
2014…
Tiana came home on 25 March 2014, but
this time on 8lt oxygen and back on cpap
at night. She struggled to wean back onto
nasal cannula as well as cope on a
normal oxygen rate of 3lt/min. Thus
remaining on a high oxygen flow. On the
20th July 2014 Tiana turned 8 years old
and had a fantastic princess birthday. On
the 21st July she went for her routine
check up, only to have the heartbreaking
news that they had no hope for a future
and suggested we prepare ourselves and
go for counselling etc – but we fought
back with Faith and prayers of so many
around the world.