A Mother's Story
Hello, my name is Cheryl. I am the mother of a child with a VP shunt implant. As a mother, I have over 24 years of experience regarding my daughter and the life she lives with a VP shunt. My daughter and I felt that her VP shunt, surgeries, revisions, shunt replacements, warning signals, malfunctions, personal experiences and feelings, should be shared. We hope that we can answer general questions and that the fears you may now be facing on a more personal level can be comforted. We hope to make a difference to the person receiving a VP shunt and the family members that surround them. We welcome your questions, opinions or comments.
We are not surgeons and do not claim to be. We do not have any medical background other than what we have personally experienced. We only offer the information on this site for reference purposes only, and the advice is based on personal accounts from my daughter who is a VP shunt recipient, and myself as her mother.
For those who are just starting down the same road we have been on for over 24 years... you are not alone. There are many shunt recipients that are ahead of us, many more following you.
In 1978, at 2 weeks of age, my daughter was diagnosed with spinal meningitis; secondary Hydrocephalus, resulting in a VP shunt implant. The role of "mommie" immediately took on a whole new meaning. What I faced was not commonly found in 1978-1979 in any parenting books. I did not find any Dr.Spock books that addressed or covered my position as a new mother, my daughter's situation, medically and emotionally. There were no computers readily available to the general public. No internet to "surf" for information. [Matter of fact, when my daughter and I first created this website in 1996, there weren't many websites on the subject either, and I find that ironic too.] Today, there are plenty of medical websites and advocate on the internet, but not enough sites based on personal experiences.
The world of Hydrocephalus replaced all normalcy of motherhood. For a long time, I felt ignorant to what hydrocephalus would bring into my child's life. How would it affect her future, my marriage, my life and the family unit? My motherhood would revolved around this medical condition and my child's future. The bonding process developed through ambulance rides, 911 calls, emergency rooms, equally uneducated family physicians and ER doctors, seizures, medication, critical care units, ICU nurses and visiting hours, neurosurgeons, recovery rooms, waiting, causes, diagnostic tests, treatments, and complications.
I admit, I devote my heart and life force to being nothing less than strength, a friend, and a mother to my daughter. As I watch my daughter mature and become more self-aware... the "apron strings" that I had tied in double knots more than 24 years ago, are being untied, but it still isn't easy. Her implant is still there. As dysfunctional as it may be, I still keep a watchful eye out. Helping other mothers has helped me.
I commuted 57 miles (one-way) to Gainesville from Jacksonville and lived in discounted hotel rooms and camping grounds to stay near the hospital in order to visit my daughter daily. This was well before the "Ronald McDonald Houses" that are available for parents of today.
The first 8 months of my daughter's life was spent in the hospital. I knew most of the doctors and cafeteria workers at Shands Teaching Hospital in Gainesville, FL. It is at Shands that God sent Dr. J. Parker Mickle into our lives. Until then, it was just a guessing-game as to my daughter's medical needs. I can look back in fond memory of Dr. Mickle getting us through those days of doubt. I thank him especially for my strength to face each new day and a future I can wrap our arms around.
Gina never wore the pretty little baby outfits or booties that many friends had given me at baby showers. They still lay neatly folded in her hope chest, only keepsakes or for my grandchildren to wear one. (Being a grandparent is a bridge we will cross one day. A bridge that brings extra concerns for her health during childbearing years). But, that's the future... I don't focus too much on that bridge... we take one day at a time, and consider ourselves blessed with each new sunrise.
I thank the Lord everyday for giving me only what I could handle... no more, no less. As I looked around my very first ICU room, 24 years ago, my first thought and prayer was in thanking the Lord that my child had "hydrocephalus"... she had two arms, two legs and all her fingers and toes, and perfect in many ways. This blessing was not the case for many of the mothers whose babies lay beside my daughter in ICU, without their arms or hands; some with hearts or stomaches developed outside their bodies. My heart hurt for those mothers and equally admired their strength.
Up until the past several years, I had collectively kept all my experiences to myself. I shared only with my Mom, who was a major part of my support system. I had a husband back then who considered our child to be "broken" and put distance between his responsibilities as a "father and husband". If it were not for my Mother, I would have being totally alone in dealing with my daughter's health needs. Never did anyone know how much energy it took to keep going.
My only goal was to face my fears daily; over protect and justify why this had happened to my only child. It can and still is, self-consuming... a VP shunt implant is a "lifetime thing". My daughter's smile and the beauty of her glow, give me my strength.
As my daughter grew up, so did I. At best, the road we've been given has had to have reason, has to have meaning... but the best answer to any doubt I have had, is that on this road we travel together, perhaps providing for a greater bond as mother and daughter; the foundation of motherhood that I would not trade at any price.
My of your emails contain many assorted fears, all have merit. My fears are still with me to this day, but calmed with knowledge of how to be alert and assertive, what the medical condition is and how it is being treated, and the operation of the shunt sytem you are given. Seek information.
It wasn't until my daughter got older that she had become a "cyberspace surfer", searching for those who share a common medical ground. Gina has made many friends and hopes to make a difference in their lives by sharing her personal experiences, feelings, answering general questions or simply providing support, comfort and compassionate understanding. For insight from one who has a VP shunt implant, please feel free to contact her.
If we can bring some light to the darkness you are facing as a shunt recipient or raising a child with a VP shunt implant... contact us. If maybe one thing we have done right or wrong can help just one parent or recipient out there, then we have accomplished the goals of this website.
Our hearts still hold a very special place for Dr. J. Parker Mickle. He gave us hope and the strength we carry with us to this day. I thank him for being a friend to me and my daughter's guardian angel.
Dr. J. Parker Mickle
YOU ARE NOT ALONE
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