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.