Elliott, six months

Share Your Hydrocephalus StoryI was 34 weeks pregnant when we found out about Elliott’s hydrocephalus, (which was caused by aqueductal stenosis).  Once he was born, the neurosurgeon told us that he was going to need surgery pretty soon.  When Elliott was 12 days old, he had a sedated MRI to check and see how severe his hydrocephalus was.  We found out at that time that the fluid had enlarged his ventricles so much, that his brain tissue was only 4 mm thick.  Because of that news, the doctor told us that it wasn’t super likely that he wouldn’t have some kind of disability or developmental delay.  We were heartbroken, but were ready to tackle the responsibility of being parents.  The next day, Elliott went in for an Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization ETV-CPC.   Once we were sent home, we were told that we needed to make sure he was hitting all of his milestones.  That was the only way for us to know if there was going to be developmental problems or not.

We went in for his 2-week post-operative follow up appointment, and found out that Elliott’s brain tissue had doubled in size.  The neurosurgeon was so amazed with what he was seeing.  He couldn’t believe how well he was doing, so he said that Elliott didn’t need to be seen again for another 3 months unless he was doing great. Then we would see the doctor in 6 months.

ElliotPlayingWeeks went by and Elliott was hitting all of his milestones right on time.  He laughed, smiled, reached and grabbed for things without any delay.  Every milestone that he reaches makes me cry, because it helps me know that he is able to make the connections in his brain that he needs to, even though it was still so thin.  He was becoming our little miracle baby.

We went in for our 3 month check up with the neurosurgeon, only to find out that the ETV-CPC had failed.  The hole that the neurosurgeon had made to help drain the fluid had closed.  Elliott was scheduled for surgery the following week to have the ETV part of the procedure done again.  It was hard sending our 4 month old back for his second brain surgery, but we knew that he was going to be okay.  He was in the best hands possible.

Elliott is now 6 months old, and everything has been great since his second surgery.  Elliott’s head is the size of a 2 or 3 year old, but he is still hitting all of the milestones that he should.  The most recent one that he accomplished was holding his head up on his own during tummy time, and he rolled over immediately following that.  He continues to amaze us everyday with is abilities and determination.

To say that we are proud of our little hydrowarrior would be an incredible understatement.  We are looking forward to seeing how Elliott’s journey will unfold.

Baby boy with hydrocephalus

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.

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

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