How to Spot a Brain Shunt Malfunction

By Tenia R. Johnson, writing for the CP Family Network

My six-year old son Braden has spastic quadriplegia cerebral palsy caused by complications of a premature birth (27 weeks gestation). He spent two months in the neo-natal intensive care unit (NICU) before we could bring him home.

At about six months of age, Braden developed a brain bleed, which led to a condition called hydrocephalus. Hydrocephalus causes the head to swell up like a balloon and affects brain development. To treat this condition, Braden underwent a ventriculoperitoneal (VP) shunt. During this surgery, a small hole is drilled into the skull so that a small tube can fit inside. The tube runs down the neck and chest and into the stomach cavity, allowing fluids to drain from the brain to the stomach. A small pump is inserted under the skin at the back of the head to help move the fluid.

Needless to say, this was a very scary surgery. Little did I know that we would have to endure surgical revisions four times within a nine-month period because of problems with the tubing and with drainage. I’m sharing my experience in hopes that others parents of children with brain shunts can learn from our journey.

What to Look For

For most children, a clear sign that a VP is not working is a painful headache. Because Braden could not communicate his pain to me, I quickly had to learn to look for other symptoms. Signs that a VP shunt is not working may vary from child to child. However, contact a doctor immediately if your child:

• Is not eating well
• Seems unusually sleepy or lethargic
• Seems unusually weak
• Vomits during feeding
• Experiences seizures

Braden experienced all of these symptoms. The first time Braden’s shunt malfunctioned he went into a tonic-clonic seizure. The second time he went into a partial seizure and his breathing was compromised. The third time he wouldn’t eat and kept vomiting. The last time he showed no obvious symptoms, but my maternal instinct and past experience told me something wasn’t right. Braden had revision surgeries after each of these episodes. In the last surgery, the neurosurgeon chose to drill a separate hole and insert a second tube into Braden’s brain to avoid the risk of a fatal bleed from removing the first tube.

It has been five months since the last revision and Braden is doing well, although memories of those tough months are still fresh on our minds. Now, when we come to the ER, they know us by name. I cannot say that each surgery gets easier; they certainly don’t. However, I have relied on the strength of my family and my strong faith in God to get me through the tough times.

I love my son Braden very much and have learned so much from him. I am his voice, and after dealing with his medical issues for six years, I’m only getting better and stronger. Thank you, Braden. Mommy loves you.