Mother and Son: A Hydrocephalus Journey

mother and son hydrocephalus
This isn’t just my struggle as a mother but this is his struggle.
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A mother’s love for her son is unconditional. I never knew love as pure as this in my whole entire life. My son is my life, and I couldn’t imagine a life without him. Seven months into my pregnancy my unborn son was diagnosed with hydrocephalus. Hydrocephalus is a medical condition that does not allow CF fluid to flow naturally. Hydocephalus is known as water on the brain. The reason for the nickname is because children born with this medical condition have larger head sizes than most normal children. As a mother of a special needs child I knew I would have to face many challenges. It wouldn’t be just a challenge for me, but for my son as well.

Children with hydrocephalus require a shunt. The shunt is a medical device that helps to drain the extra fluid from the brain. Too much fluid can cause too much pressure on the brain. A thin tube is connected to the shunt device. This tube allows the fluid to drain into two different locations, depending on the type of shunt. The extra fluid can either be drained into the heart or into the stomach. This device is an essential element for a child with hydrocephalus. It is a survival tool for them.

I knew right from the start my son one day would have to have a shunt placement surgery. A surgery is something a mother never wants to see her child endure. My son’s medical condition required for one to be performed. Brain surgery is a serious operation and can have anything go wrong. My son required many routine checkups, which are very important for him. A regular routine visit revealed the worst news. No mother should go through the agony of waiting and knowing your child will have to go underneath the knife.

Children’s hospital has been great to my family as well as many others. My son was seven weeks old when our lives forever changed. They gave my son a chance to be a normal child, or as a normal as possible. I can recall this day as if it happened just yesterday. The neurosurgeon informed me, his head size was getting larger and the CF fluid was not draining as it should, which occurred in hydrocephalus patients. A shunt as she described would need to be placed in as soon as possible. I felt my heart jump into my throat, choking me.

He would be scheduled as a walk in. This meant he would be fitted into the following surgery schedule. Registration gave us a number for privacy purposes. My son was prepped and ready for surgery. His father and I watched our son being wheeled back into the operating room on the gurney. Fear echoed in our hearts, it beat in unison with our hearts. The surgery would take at least three hours. It was the scariest three hours of my life. Anything could go wrong and there was nothing I or his father could do but wait and pray. We sat on pins and needles waiting. It was hard to imagine my little boy being cut. In my heart I knew the VP shunt would help to release the extra fluid from his brain. We both knew it was a necessity for him.

The three hours of waiting didn’t pass quickly. The number we were given for our son was a number that would appear on a surgery status board. We grabbed a bit to eat and returned to search the surgery status board. The number we were first given at registration was not on the board. Panic and fear rose quickly in our throats. Where was our little boy? Was he alright? What was going on? These were questions that ran quickly through my mind like a freight train. We tracked down a security guard who put our fears to rest. As he radioed in for an answer, the wait for a response seemed to be hours. They explained that since he was a walk in surgical patient and did not have the surgery on that specific day of registration, he was given a different number.

Fear quickly turned to anger for a moment. We were greeted with his doctor after sometime. We were allowed to go visit with our brave little guy. The surgery went great. The moment I saw him, my heart broke. It was hard to see my baby boy in pain and to see so many tubes and wires hooked up to his tiny body. I was afraid to hold him in my arms, afraid I would cause him more pain than he already was in. His journey was just beginning and I knew there would be many more challenges in both of our lives yet to come.

My son will be four years old in May of this year. He has not had a shunt revision nor has he had any complications from the surgery. In fact all of his doctors are in amazement of how well he is doing. He will have many delays in his speech, social and various other developments. My son will behind most children his age. He has made great strides and improvements. He has outdone himself. I couldn’t be more proud of my son. His VP shunt has been on the same setting since the day it was put in. This surgery has given my son a new beginning, a chance to blossom. The future is unknown to us all. I do know there will be ups and downs with my son’s hydrocephalus. It is unsure if there will be any revisions in his future, only time will tell.

***Update***

My son is now six years old and about to turn seven in a few months. In these last few years, there have been no revisions. His shunt has been on the same setting since his surgery back in 2008. There have been many ups and downs. He has violent behaviors. These temper tantrums are brutal against others and himself. Despite the violent rages, he is still the sweetest boy who has a hard time understanding the ways of the world. This month we had him tested for Autism. Hopefully we will have answers for his behaviors.

It’s a very painful and frustrating situation to watch him lash out against others and himself. He never used to be this violent. It’s almost as if he is bio polar. His behaviors come and go quickly within matter of seconds. You never know what will set him off. You are walking on egg shells in your own home.

As a mother it is painful to watch your own flesh and blood beat himself up in his moments of frustration. I don’t know how to help him. In these moments I feel helpless and ashamed of myself for not being able to do anything for him.

Raising a special needs child isn’t easy. His father isn’t in the picture. It’s just me. I do the best I can. I’m not perfect. In my heart, I know my son has more medical problems than what is currently present. It could be Autism or it could be some other disorder. But there is something else amiss with him. I just can’t put my finger on it, not yet.

This isn’t just my struggle as a mother but this is his struggle. I couldn’t imagine my life without my son. He has taught me unconditional love and strength. Despite the struggles we have each other., he is always in my corner with a dashing smile. His smile can melt anyone’s heart. I have no idea what the future holds for him or for me. Whatever happens we are in this fight together. My son’s courage is something I wish I had. He gives me the strength to keep going even when the skies are dark and gloomy. He brings a joy and laughter to all those who meet him. He doesn’t know hate.

As a mother of a special needs child, I want other parents to know they are not alone. It is a struggle to raise a child who is delayed. There are no magical cures for handling these situations. They are not alone in the world. They have to find strength within themselves as I have. It has been a hard journey. But each day it does get a little bit easier. There is hope at the end of the rainbow.

 

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