Cayden, 11 months

I can remember the day like it was yesterday. We were 15 weeks pregnant and going to our first appointment at high risk. It started out like any other day. My husband Michael and myself both took off of work so that we both could see our little one for the second time. The ultrasound technician comes in, takes her images and comes back soon after followed by the doctor. He didn’t waste any time at all. He looked me straight in the face and said “your baby has Spina Bifida.” At that time my head was spinning, we were being told all of this information like we were suppose to understand everything right away. It was scary. I was scared. I blamed myself for the longest time, thinking that it had to be all my fault. How could this happen.

We continued with check ups at high risk where they did an ultrasound every time and kept telling us that so far his head was looking ok. Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born. I didn’t get to see him long, they put a hat on him, let me give him a kiss, and took him away. He went off to the local children’s hospital while I was stuck healing from my c-section at a hospital miles away. That was one of the hardest things. Later that afternoon, my husband is finally able to go in and see our son and FaceTime me from the NICU. To my surprise, Cayden was born with a rather large forehead. He had his myleomeningocele closure surgery the following morning and then they started trying to figure out why his head was like that.

They originally thought that it was his brain pushed up. His skull did not form properly so he had a huge soft spot in front. After 10 days, he was finally diagnosed with hydrocephalus. He had a VP shunt placed and he was doing great. At 19 days, we finally got to take him home. It wouldn’t be his last visit to the OR however. After a short 3 months, we took Cayden in because there was fluid pooling around the shunt tubing, he ended up having his second brain surgery at almost 4 months old. After that we didn’t have any more problems. He was doing great and that’s when his neurosurgeon decided that it was time to involve a plastic surgeon to fix the hole in his forehead. So in December, we handed our baby boy over once again to surgeons we barely knew. At this time they did another revision to change the valve and reconstructed his forehead using a doner bone. Since then, he has been amazing. He is the happiest baby I have ever come to meet. He is my life. I don’t know what I would do with out him.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

Change this in Theme Options
Change this in Theme Options