Myles

We found out Myles had hydrocephalus when I was 22 weeks pregnant, at his anatomy scan. When we first found out about his diagnosis, we were terrified. I left the clinic unable to speak, and in tears. After having two perfectly healthy children, this was definitely not the news we expected. We had never even heard of this condition. 

We went on to learn he also had duodenal atresia and two holes in his heart. Preparing for his birth going forward involved multiple appointments with a specialist, even before he was here. Myles had quite a few abnormalities already found, so we were seeing several specialists and had two ultrasounds and nonstress tests (NST) per week, which was really difficult. 

When he was born, the doctors found he had more conditions that we did not know about – one requiring a colostomy bag at five days old, which meant his shunt placement had to wait. He was able to have a reservoir placed that was tapped daily, and after a month and a half in the NICU, he finally had his first shunt placed. 

Myles spent 44 days in the NICU. Those days were very traumatizing, and much of it is a blur looking back. With two older boys at home, we felt guilty that we couldn’t be in two places at once, but tried to juggle it the best we could. We were at the hospital every day, though.  

It hurt so badly when we had to leave Myles, but I knew the NICU nurses were taking such great care of him. They were wonderful. My biggest and best memory was the day I walked in, and the nurse pointed to the board, which said, “Go home Friday!”, and I immediately started crying and almost fell to the floor. I was so happy! 

After Myles’ shunt placement, he got meningitis, which was even more terrifying. It was very scary having to wear different types of gear to go into his room. It felt like he was so isolated, but he got through it. 

Myles has had one revision since his original shunt placement. After seven surgeries total, he has exceeded all his doctor’s expectations. 

Myles is now three and a half years old, and he is finally walking… well, running! He is fast and a troublemaker! Definitely making up for lost toddler time! He loves to socialize and shocks people with how well he speaks and knows sign language. He may be behind physically, but he is very smart! 

He inspires us all every day and is the happiest toddler! 

Myles has taught us all patience, faith, finding silver linings, and never giving up. He is still so happy, even after all he’s been through with seven surgeries, many hospital days, and endless appointments. We admire him so much for it, and it helps us to remember to always focus on the good in life, no matter the obstacles. 

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