Wyatt, 18 months

In August 2015 I found out that I was pregnant. My first two ultrasounds were great, but when we got to the third ultrasound they had found a cyst on my baby’s brain. They thought that it was just early and it would be able to work itself out and that things would be normal the more that he grew. When I was 30 weeks pregnant, they finally figured that it may be hydrocephalus and wanted to send me to a specialist.

I found out at 33 weeks pregnant through an ultrasound at the specialist that my little boy did have Congenital Hydrocephalus. I was sent for a fetal MRI, I had an amniocentesis, many blood tests, etc. to see what all he had and figure out a plan. In April of 2016, I was told that his hydrocephalus was so bad that he would have to be delivered early because they were scared they wouldn’t be able to get him out. At that time, I was also told that his brain stem and cerebellum were so under developed that they didn’t believe that my sweet Wyatt would live very long, if he even made it through his birth. We made a plan for him to be looked over by the NICU team when he was born. Family members would be able to meet him and spend some time with him, they would keep him comfortable and happy. We weren’t going to do life saving measures as I didn’t want him to live out what life he was going to have in pain. It was heartbreaking and it’s still so emotional now just thinking about that time.

On May 2, 2016 I went in at 37 weeks pregnant to have my c-section and deliver him. We were preparing to say goodbye and I remember just crying and crying. I went back and got my spinal block and I waited for them to bring my mom in, as she would be doing with me. They started the c-section and then when it was time to pull him out, things were a little crazy. His head was so big, the doctor had to put a knee up on the operating table and pull him out pretty much as hard as she could, which took a good minute. I didn’t think they’d ever get him out. This baby came out crying and he was so beautiful. They did his assessment, during which he quit breathing for 6 minutes, but was able to be brought back and put on C-PAP (only for 9 hours before being able to breathe room air!) and he was sent to the NICU. His head was 77cm and they prepared to do his surgery the next morning at only two days old to put his shunt in.

His surgery went great and I don’t think it even took an hour. It was crazy what a difference that shunt had made in just 24 hours from having it put in. He was in the NICU for 10 days before being brought home.

My sweet boy is 18 months old now. We have never had a shunt malfunction or failure (and I pray everyday it continues to work), he crawls and he just started walking like crazy along the furniture and window sills. He’s the funniest, sweetest, most caring and heartfelt little boy I’ve ever laid eyes on and I’m so proud of him.

I had never heard of hydrocephalus before finding out that he had it. I pray that we can continue raising awareness and one day find a cure.

 

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