Robbie, 1

Robbie

There was so much excitement as my husband, 3 year old daughter and I headed to my 18 week ultrasound.  My 5 year old son was at kindergarten and couldn’t wait for us to pick him up that day and tell him the news.  We had been talking about it for weeks, trying to guess if the baby was a boy or a girl.  After already having two healthy children, the thought never even crossed my mind that my 3rd little sweetie would be anything but a happy, healthy baby.  The technician gave us the news that we were having a boy and my husband and I joked around with our daughter, who was convinced she was getting a baby sister.

I remember thinking it was strange when the doctor came in and started taking another look.  That is when she told us there were abnormalities, including that the ventricles in his head were were slightly enlarged.  The doctor arranged for another ultrasound with a specialist and meeting with a genetic counselor the next day. She was very thorough and compassionate but the words that stuck in my head were “there is still time to terminate the pregnancy.”  Just like that my world was turned upside down.  Despite so much uncertainty and fear, one thing that was certain was that God gave us this little boy and we were going to do everything in our power to bring him into this world and shower him with love. So that is exactly what we did.

There were numerous doctor appointments, tests and ultrasounds over the next few months which ultimately confirmed he had Hydrocephalus. Due to his enlarged head size, I delivered Robbie via cesarean at 37 weeks. He was taken to Children’s hospital the same day for a MRI and Robbie had his first brain surgery to place the shunt the next day.  Still recovering from the c-section, I was not with him when he went for surgery.  Being apart from him was agonizing. When I was finally released from the hospital and we were reunited in the NICU at Children’s hospital I was so relieved. We were both on the road to recovery and were going to be fine…or so I thought.

During morning rounds, one of the doctors stopped in to discuss Robbie’s long term prognosis.  What I thought was just another visit from the one of numerous doctors checking on Robbie turned out to be a conversation that I will vividly remember for the rest of my life. The doctor told us that the excess fluid in Robbie’s ventricles caused severe brain damage and she showed us images to support it.  She explained that the cognitive area of his brain was so thin that he would never be able to make the correlation that the sky is blue. He would never be able to walk. He would never be able to talk.  The list of limitations went on and on.  It was too much to take in…I stopped listening and just stared at Robbie’s sweet face.  Looking into his eyes always gave me comfort. It’s as if my strong baby boy was trying to tell me “don’t worry mom, we got this” and he was right.  He truly is my hero.

The first year was definitely challenging with emergency room trips, a second brain surgery, and countless doctor appointments but Robbie is doing amazing.  The prognosis we were given couldn’t be further from our reality. He is a sweet, happy, curious one year old who is crawling all around and very motivated to chase after his brother and sister.  The joy that Robbie brings to everyone he encounters is inspiring and I look forward to seeing all that my little guy will accomplish.

Robbie with his siblings!

Tell us about your journey with hydrocephalus!

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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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