Our Story

In honor of hydrocephalus awareness month one of the ways to spread the word and raise awareness was to tell our hydrocephalus story. My son Wesley has hydrocephalus. He is two and a half and lives everyday a little different then the average two year old.

When I was 19 weeks pregnant the doctors told us our baby had ventriculomegaly (enlargement of the lateral ventricles in the brain). We were stunned, but determined to be strong and endure whatever would come. We were seen very regularly throughout the pregnancy. Then at 31 weeks we were told our baby had a completely different medical condition and that he wouldn't make it. Heartbroken we made arrangements to move closer to our family in the Boise, Idaho area.

 A few days after we moved our new doctor told us our previous doctors had been incorrect. Our baby would have severe hydrocephalus as previously thought. We were a little comforted, but still told to prepare for the worst.

Wesley was born (a week after our move) by c-section and was sent to the NICU and was shunted two days after his birth. He was also born with a meningocele on the back of his head which is very uncommon.

Wesley 2 hours after birth

Wesley after his first shunt placement and very first surgery

Two weeks after his shunt surgery he had surgery to repair his menigocele. After 23 days in the NICU he was able to go home finally. At 5 months he had his first shunt revision surgery. Then again at 14 months he had yet another shunt revision surgery. He rolled over for the first time at 8 months, began to belly crawl at 12 months, crawled on hands and knees at 18 months, and walked unassisted for the first time 2 weeks before he turned 2 years old. Because of the extra weight in his head everything was harder and extra work had to be done to achieve these goals.

Wesley at 23 days old getting ready to leave the hospital

Wesley at 5 months old after first shunt revision

Wesley at 14 months after his second shunt revision surgery

Wesley is now very healthy active little boy. He is so strong and has endured so much poking and prodding yet is still very happy. He is not very happy when he sees a white coat; thankfully both his doctors don't wear them.  At his last check up his neurosurgeon said he looked great.

Wesley with his occupational therapist

After all the worrying, MRIs, CTs, fevers, doctor visits, therapy, and shunt failures we are so glad that we have our beautiful boy. He has taught us endurance and hope. September is hydrocephalus awareness month and I would encourage all of you to go to the Hydrocephalus Association's website. It is filled with tons of information, and ways to help kids like Wesley by donating money to further research into other methods of treatment and perhaps one day a cure. Because as stated before the only treatment is brain surgery which is (as any parent will tell you) one of the hardest things you will have to watch your child go through; so research into other less invasive treatments is very important to families like ours.

I have signed up to do the Hydrocephalus Association Virtual Walk. If you want to donate to the cause go to this link: Schwendiman Family Virtual Walk. My goal is to walk/jog 40 miles by the end of October. Each mile I run I hope to get a donation of $5. If you can help please support this cause. Thank you for reading!