God doesn’t give you anything that you can't handle...
Allison Janson ( Ally)
On June 8th 2000, we were blessed with a beautiful baby girl, Ally. Unaware at the time, Ally had differences that would change our lives forever. Our pregnancy was uneventful, scans and measurements were right on key. When Ally was born, she had physical appearances that we came later to find were consistent with FGFR2 gene mutation, consistent with Crouzon/Pfieffer syndrome. She was sent after a few days of birth to NICU for dehydration, but was worked up for a multitude of other complications. Her brain scan at the time: normal. For the next year she was closely followed by a pediatric neurologist and ophthalmologist. Ally met all developmental milestones and her head circumference did not raise any flags.
On a routine visit to her ophthalmologist, he noted her optic nerves were swollen. Her neurologist was notified and immediately sent her for an MRI to confirm she had Hydrocephalus. Her neurologist felt the cause of her Hydrocephalus was a narrowing of the aqueduct of Silvus and there was a fairly new procedure called an Endoscopic Third Ventriculostomy that had promising results.
At the time, there was little information on the computer about the ETV ( only 5 links back then). The major risk we read was death, secondary to bleeding from the basilar artery. Just shy of her first birthday were we told our daughter has Hydrocephalus, she needs brain surgery and could die from complications. Not what we were expecting! Because Ally was asymptomatic, we were able to interview several neurosurgeons and weighted the risks and benefits of shunts vs ETV.
On July 9th 2001, Ally underwent the ETV procedure at Columbia Presbyterian, NY. To this day, Ally has been shunt free and surgery free. She is frequently monitored by her neurologist and neurosurgeon for complications related to Hydrocephalus as well as monitoring of her Chairi Malformation and a more recent diagnosis of Basilar Invagination.
Ally is leading a fairly normal childhood. She is involved in Tap and Jazz dance, Girl Scouts, and Art and maintains Honor Roll grades. She is a typical tween, into hanging out with friends, playing with her DS and I pod, texting and the typical love-hate relationship with her younger sister.
Although Ally doesn’t seem to have recurrent complications related to Hydrocephalus, she will always have Hydrocephalus. We are aware that one surgery doesn’t not mean that she is cured. She will need a lifetime of monitoring and constantly remember that any physical complaints or emotional/cognitive changes could mean a worsening of the Hydrocephalus.
Although Ally was too young to remember the emotional and physical trauma of the surgery, we do not let her forget that she still has Hydrocephalus. It is and will always be part of her life.
We incorporate our reminder through involvement with the PHF, going to support meetings, attending fundraisers, raising money to provide awareness and government involvement.
Some people just walk away and try to forget, but our family and friends will never forget that past research has helped to save my daughter, and other children deserve the same.