CHICAGO – Hundreds of walkers gathered on the lawn of Soldier Field on Sunday, Aug. 18 to support those that are living and have lived with Hydrocephalus.
Hydrocephalus is a condition that has no cure, and its only treatment requires brain surgery. One to two of 1,000 babies born are affected by this disease.
At the walk on Sunday, we asked some questions of the walkers to better learn their Hydrocephalus story.
Two-year-old Zane Yousif, of Tinley Park, was one of those walkers. Zane's mother Susan answered on his behalf.
What is your Hydrocephalus story?
At two and half months old, our youngest son Zane was diagnosed with hydrocephalus and had his first brain surgery shortly thereafter to insert a shunt to redirect the flow of fluid to his abdomen. Luckily for us, Zane’s head was still forming and it grew in size to accommodate the fluid build-up, so he was fortunate not to have any permanent brain damage. About three months after his first surgery, Zane underwent two more surgeries to remove and replace the shunt when it was found he had an infection that moved to the brain (bacterial meningitis). Approximately six months after that, just when we thought we were in the clear, Zane started behaving a little differently, so we took him to the ER to discover that this time his shunt had malfunctioned. So in his first 14 months of life, Zane has had six major brain surgeries. Zane spent over 70 days total in the PICU for the procedures and my husband and I spent a significant amount of that time at the hospital with him, leaving our two other young children by their grandparents.
How has it impacted and altered your life?
Hydrocephalus has impacted our lives in so many ways, negative and positive. We’ve seen our baby going into and coming out of surgery more times than any parent should; we’ve seen him in unbelievable pain crying and not being able to help him other than to hold and hug him and tell him it will be okay; we’ve seen his brother and sister wonder and worry about their baby brother; it has made us constant worriers; and it definitely has been a financial burden.
On a positive note, it has made us extremely grateful that we know what Zane has and how to “fix” it even though that is never guaranteed to work while many parents don’t have even that slight comfort. It has made us realize that every moment in life is precious and that can all change in the blink of an eye. It has made us more aware of not just hydrocephalus, but other not well-known conditions and diseases. It has brought our entire family closer and shown us that nothing is more important than good health, family and faith.
What has been the biggest struggle Hydrocephalus has caused?
There have been many. The biggest struggles have and continue to be the uncertainty and constant worrying. The symptoms of shunt malfunction and infection start off like any typical illness or growing pain that every child goes through from teething to ear infections, from a cold to a fever. With infants and toddlers that cannot communicate, we as parents have to watch our children extremely closely for signs that something may be wrong with their shunt. It is difficult and stressful and you almost cannot help but to become a nervous nelly.
How has it affected longterm outlook and goals?
For Zane, I think his outlook is generally very positive. At 27 months old, he almost clearly speaks two languages and is incredibly friendly and outgoing with a smile permanently glued to his face. Luckily, he will not remember the first 14 months of his life, which remarkably changed his family’s world. Barring any major issues or infections in his future, which we all know are very likely with hydrocephalus, I hope and pray that hydrocephalus will not change his outlook other than the inconvenience of checking in with his neurosurgeon every six months.
Have there been any doctors or hospitals that have stood out over the years?
We’ve only been to one hospital and the doctors, nurses and staff at Advocate Hope Children’s at Christ in Oak Lawn, Ill. were incredible. Particularly, ACPN Laura Burokas and Dr. Dimitrios Nikas (Zane’s neurosurgeon) have been extremely helpful and encouraging and helped us get through times that were very difficult on Zane’s immediate and extended families. Their honesty, bedside manner and ability to make very technical concepts understandable to those not normally in a hospital setting were and are amazing.
What do people not know about Hydrocephalus that you think they should?
I generally wish more people knew about hydrocephalus – how much it can change the person’s life and the lives around the person living with it; that each time these children have brain surgery, they generally are also having surgery to their abdomens (in the case of a VP shunt); that parents of children with hydrocephalus never have a moment where they feel confident that their child is OK, we almost incessantly worry about every bump, fall or fever; that a measly $6 of research is done for each person living with hydrocephalus; that awareness and funding need to be raised so that we find better treatment than a shunt which has malfunction and infection rates that are just not acceptable in this modern world with some amazing medical advancements!
What made you want to walk for Hydrocephalus?
Obviously, I walk in honor of Zane and what he’s been through and what he’ll go through as he grows up. I walk to raise money for research and awareness for such an underserved but worthwhile cause that impacts over a million Americans and is the leading cause of brain surgery in children. Something needs to be done about that and I am hopeful something will be as long as we raise awareness and funding.
Where do you see yourself in five years?
Where do I see Zane in five years? If things continue to go the way they have for the past 13 months, I pray and hope to see Zane in school with his older siblings Kyce and sister Selma starting 2nd grade, reading and writing, and just being a normal and happy seven year old.