Just like how we remember where we were when 9/11 happened, the call from our ultrasound technician was similar. Our first son was a textbook pregnancy and birth, so in October 2015, when I got that call about our second son at 20 weeks, I was really beside myself. Hydrocephalus. I had never heard of the word and it sent me into a panic. Nobody could answer any questions about what it meant for us and with each google search, I fell deeper into the black hole of fear and anxiety. The fetal specialist said that his case was a very severe one, and that the prognosis was, as you can imagine, not great. He even mentioned that if he even made it to birth, he might be stillborn. We could terminate or we could wait to see what happens. He concluded our appointment with a suggestion to think of his quality of life and that he may never walk, talk, or communicate due to the extra brain fluid and the severity of his particular case. We were reminded that because we had no history of genetic conditions, the next child would likely not have any problems.
We thought long and hard for 24 hours. We did not want him to suffer, but we wanted to give him a chance. The next day we named him Hiro, which means vast in Japanese. We thought the name was very fitting. We would not decide; Hiro would guide us in how long we would have with him. I was just hoping that I could hold him in my arms, even for a second after he was born. I knew that this alone would be well worth everything. The rest of the pregnancy was difficult, because there was no way to prepare, and no idea about what the future held.
Hiro joined our family in March of 2016, with a host of other medical conditions, including a missing corpus callosum and a cyst taking up 1/3 of his brain. But no matter! We could not have been any happier. He has changed the whole trajectory of our family and our hearts are so full. He was shunted at 3 weeks old, with no malfunctions. April 1 will mark his 2nd shuntversary 🙂
The road to normalcy has been difficult, but so very worth it. We are beginning to find our sea legs and hit a stride in our new special needs world. It is such a beautiful and accepting community of people and we are greatly indebted to it. We just completed our 2nd Hydrocephalus WALK in Denver, C.O. and we will continue to do it until our last breath. Hiro has a lot going on medically, but he is happy. He loves music, sings when he wakes up, sings as he goes to sleep, and has a heart of gold. He is in full toddler mode, and we love watching every milestone that he hits with grace and tenacity. We enjoy telling others about his condition, and hope our outreach will encourage and raise awareness for a cure!
Tell us about your journey with hydrocephalus!
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If you would like to share your story, please email it to: firstname.lastname@example.org with the subject line “Share Your Story”.
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