Owen’s Diagnosis’

August 13, 2010

Owen was diagnosed with Hydrocephalus when I was 20 weeks pregnant. Hydrocephalus is a back up of Cerebral Spinal Fluid (CSF) in the brain. This can be caused by many different things (i.e. brain bleed, meningitis, aqueductal stenosis). It can occur in people of any age. 1 in 500 babies are born with it. Because it is so common, it is so crucial to raise awareness. At first we didn’t know what caused Owen’s hydrocephalus, but as tests came back it was narrowed down to aqueductal stenosis. I was able to hold off until 38 weeks for my c-section. When Owen was born his head was 50cm. The size of a 2 year old.

He was transferred the day after he was born to St. Louis Children’s Hospital where he had surgery to get his VP shunt placed. We are so lucky that he had no other health problems. Those first couple of days when Owen and I were in different hospitals were the worst. Thank goodness my husband and family are so wonderful.

Owen was released from the NICU after 6 days. We have made it to 2 and a half with no revisions. 50% of babies who get a shunt need another surgery within the first year.

At first Owen’s only other problems have been related to his eyes. He had two eye surgeries for exotropia and has CVI. Recently an MRI has discovered a few other issues in his brain. He has a chiari malformation. That is where the cerebellum pushes on the spine. It isn’t really affecting him right now, but something to keep an eye on. The MRI also showed his corpus collasum didn’t completely form.

He is fairly delayed and receives DT, PT, OT, Speech, Hippotherapy, a Nutritionist and Vision Therapy. We are also hoping to get an Orientation and Mobility therapy evaluation soon. He catches up a little more every day with kids his own age. He started to crawl at 20 months and is now working on walking with a reverse walker. We are so excited!

Owen is now in preschool at Howard Park Center. It is a great facility that integrates special needs kids with typically developing kids. They also perform therapies there. I really think Owen is going to make some big gains getting to spend so much time with kids his own age.

Owen is the most wonderful little guy. At his last scan his ventricles were getting smaller and his brain is continuing to expand. Even though it is hard sometimes I couldn’t imagine life any different. 🙂

In most cases, a shunt can be placed to help regulate the flow of CSF. Owen has a VP shunt. This means he has a piece of equipment that goes into the ventricle of his brain and a tube runs down his neck and chest and drains the fluid into his abdomen where it is absorbed by his body. Some people receive shunts which drain the fluid directly into the heart.

Hydrocephalus is something that has no cure. Owen will need a shunt for the rest of his life. Most children have numerous shunt infections or revisions through out their lives. That is why it is so important we raise awareness. People need to be aware of what hydrocephalus is and that we haven’t had a medical advancement in the treatment in over 20 years.

The month of September is now National Hydrocephalus month. This was just past thanks to the hard work of some really great people. Hopefully we will see some changes in the treatment and awareness of hydrocephalus.

Thank you so much for taking the time to read my note and become more educated on something so common.

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