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June 1st not only marks the start of
hydrocephalus month in Canada, but it is also the first birthday of
our twin girls, Layne and Baylor. Layne was born with congenital
hydrocephalus. At
our
20 week ultrasound, we were told that the ventricles in Layne’s
brain had an accumulation of cerebral spinal fluid (
csf)
.
The prognosis was
severe.
Her
brain did not have a chance to develop properly
. If
Layne
survived
she would not see, hear, walk or
talk.
No
quality of life. We were offered
to terminate
the pregnancy.
Without hesitation we
turned
down the offer and became
determined to fight for the lives of
both our babies.
We left that appointment confused, overwhelmed and broken. We
had heard of “water on the brain” but knew nothing about it, or how
it could affect an unborn child, their development, or their future.
W
e tried to stay positive and
found a community of other families
who’s lives had been altered by hydrocephalus. We held on to
hope.
The twins were born at 36 weeks and 5 days. Both strong and
singing to the world.
La
yne’s
MRI after birth showed the ventricles
were very enlarged, leaving little brain matter left. Her
prognosis was grim. Surprising everyone Layne passed her eye test,
and then her hearing test. She gained her strength and was able to
come home after 17 days in the NICU.
Layne’s perseverance shined
and she continued to
surprise everyone including her medical team.
Shortly after she was home we noticed signs of pressure that
would inevitably require a shunt. With support from family, friends
and the County of Simcoe Infant and Child Development Program with
Empower Simcoe, we were able to get Layne the help she needed, the
shunt that saved her life. She underwent her first brain
surgery
at Sick Kids on
July 30th 2020, just shy of 2 months old. At that
time we were told her future was unknown. We did everything we could
to help Layne overcome any obstacles. She went to a physiotherapist
who was very impressed with her, and
who envisioned
Layne’s
future as bright. As time
went on
, Layne continued to defy the odds set against her
!
Learning to roll, sit up, crawl, stand and WALK! She has such a
strong personality and is showing us we have much to learn about hydrocephalus.
Hydrocephalus Canada is a non-profit, organization located in Toronto. Founded in 1973, the association empowers those impacted by hydrocephalus and spina bifida to experience their best life. They provide continued support, connecting families in the community. This organization will be an integral part of laynes future.
Streamlined medical care and support helps reduce the stress of any medical diagnosis.
For those living with hydrocephalus and spina bifida, the pathway to care can be fractured and insufficient. There are disparities, deficiencies and inequities across the country.
At Hydrocephalus Canada we work every day to establish environments that protect, support and enhance the lives of those living with, or at risk of developing, hydrocephalus and/or spina bifida.
How do we do this?
- By increasing awareness about hydrocephalus and spina bifida.
- By creating solutions to:
- support prevention, early and accurate diagnosis;
- access safe, effective and appropriate treatment;
- advance new treatments
- optimize health outcomes
- By developing education resources and support tools for patients, caregivers and healthcare professionals
- By establishing supportive communities that encourage inclusive, proactive conversations and activities
- By funding meaningful and impactful research
BUT WE CANNOT DO THIS WITHOUT YOUR HELP
You can be part of the success story by influencing awareness, education, support and research. Please donate today, and help empower those impacted by these conditions to experience the best life possible.
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