Nicholas was first diagnosed with hydrocephalus at 28 weeks in utero. I had a normal uneventful pregnancy up until then. I had gone in for a follow up ultrasound to check my placenta location when they discovered his hydrocephalus. Fast forward 12 weeks and Nicholas was born on his due date via c-section, after a long day of labor. He was 11lbs 7oz! (No I did not have gestational diabetes) He had an ultrasound of his head shortly after birth and it was normal, no fluid!

The hydrocephalus was written off as a fluke thing in utero and we were told although he was a big baby, he was healthy. After the first couple weeks we began to notice things that just didn't seem right. He has two older sisters, so we were not first-time parents. He had a very hard time with his feedings, he would choke, had a hard time catching his breath and he would gasp for air. His eyes would do funny things, and I noticed he couldn't track to the right side. Somedays he was really lethargic.

I remember one day specifically when he was 8 weeks old, he slept from 3:30pm to 9:30 the next morning. I mentioned that he had hydrocephalus in utero several times to different specialist and was blown off each time. Around the time he was 12 weeks old my intuition was in high gear, and we needed someone to listen to us. So, my husband and I took him to the ER at our local children's hospital we begged the ER doctor to order an ultrasound of his head. He thought we were crazy and commented that he looks like a heathy baby and preceded to send us on our way. After much persuasion we convinced him to order the ultrasound.

The ultrasound confirmed Nicholas had hydrocephalus. The next thing we knew they were starting an IV and preparing to life flight him to another Children's hospital 2 hours away. At that time our daughter's Emma and Olivia were 5 and 4 and we needed to make arrangements for them. Since Nicholas was stable and after many failed IV attempts, they agreed to let us drive him ourselves. He had an MRI the next day and it showed severe hydrocephalus with scalp edema and Chiari Malformation.

I will never forget the moment the neurosurgeon walked in the room and said your baby needs brain surgery. His vp shunt was placed the next morning. Nicholas's shunt has been going strong for 6 years now! When he was a year old it was discovered on a routine echocardiogram that he had a cardiac tumor. Genetic testing would later confirm he had Gorlin's syndrome (No family history). He is developmentally delayed and has been in therapies most of his life. He is a true example of determination and faith.

He is doing everything we were told he may never do and so much more. He has an amazing care team of doctors, specialist, and therapist. Some of his specialists have commented that you would not expect to see the child they see when they walk in the room after reading his medical history. Now that he is getting older, he is more aware of his shunt. Some days are hard..., he doesn't understand why he has to have a shunt and wishes he could take it out. He says it's not fair. He is in kindergarten and has been blessed with the most amazing teacher. Nicholas is a happy energetic 6 yr. old. He has a gift of lighting up a room and has touched many hearts.