You may have heard about Baby Klaus in the news recently. Ten months ago, he was born with hydrocephalus in El Paso, TX. For unknown reasons, he was not treated with the standard surgical placement of a shunt for hydrocephalus – a life-long neurological condition with no cure – but sent home and his parents were given little hope that he would live. He has not only survived but has done so under extraordinary circumstances. His head is three times the normal size for an infant of his age and the increased pressure on his brain has affected development.
It is common to see images of children with untreated hydrocephalus similar to Baby Klaus in developing countries and in the U.S. prior to the invention of the shunt in 1952; but since that time in the U.S., hydrocephalus is treated surgically despite many suffering from shunt failures that require repeated brain surgeries simply to live.
Fortunately for Klaus, his parents sought help from Sheri Burdine, a former Hydrocephalus Association partner and founder of the support group Hydro Angels Over Texas, who arranged for his care by a pediatric neurosurgeon David Jimenez, MD in San Antonio, Texas. He is now receiving treatment for his extreme condition. The road ahead is still uncertain for Baby Klaus. It is difficult at this early stage to predict the challenges he will face, but the parents now have hope for their baby, according to Burdine.
The tragic story of Baby Klaus dramatically underscores the importance of hydrocephalus awareness. It is being reported in the media as a rare condition. Actually it is a common medical condition and there is a great need for better treatment options and increased medical research.
Hydrocephalus occurs in one to two births in every thousand and it has been estimated that up to 5% of Parkinson’s and Alzheimer’s patients are actually misdiagnosed and have hydrocephalus. It can also be caused by traumatic brain injuries such as those seen in Iraq war veterans who have experienced concussive explosions. Yet outcomes for the treatments of hydrocephalus are not well studied and medical treatments for this common condition vary based on medical training.
Sadly Baby Klaus could be the catalyst needed for all people affected by hydrocephalus to tell their story – to their neighbors, to the press and to their congressional representatives. A multi-billion dollar medical burden on our society should not be left to the affected, parents and loved ones to solve. Our government and the National Institutes of Health must make hydrocephalus a priority to be addressed.
We urge you to act to help increase the volume of the message – “there must be improved treatments and a focus on a cure for hydrocephalus.” No child born in the United States today should be left untreated for hydrocephalus and together we can raise our voices, in honor of Baby Klaus, to let our government and society hear our plea for increased medical research and awareness. Please contact your Congressperson or Senator. Let him or her know about Baby Klaus and tell them why you care. Here are some resources on how to write to your congressional representative.