Jonah’s Story

Hi- Our beautiful son has hydrocephalus. We were 27 Weeks along when our little boy was diagnosed with Severe Hydrocephalus. We had just had an ultrasound two weeks earlier due to a polyp and there had been nothing wrong. In just two weeks our lives would be changed forever.  When we got the news, we were broken, devastated and confused. We had never heard of Hydrocephalus. What was it? Why did he have it? What caused this to happen? Unfortunately these are all things that no one knew.

The next few months were devastating, scary and overwhelming. So many questions and not enough answers. We were sent to a special Ob group that deals with high risk pregnancies, and then we picked our Neurosurgeon. None of the Ob’s had the answers we wanted. In fact, they gave our son a death sentence. People kept quiet and wouldn’t say much, alluding to the fact that our son would have MAJOR issues in his life. Not our Neurosurgeon though. We did as much research as we could. In just a few short weeks, we went from never hearing about hydrocephalus (even though it is the number one cause of pediatric neurosurgery), to becoming experts on the subject. To inform our friends and family, we built a website so we could keep everyone updated without having to explain the same thing 100 times. This was great because our emotional state was fragile and we needed to take care of ourselves.

When we met with Dr. Osterdock, we had a huge list of questions to ask her. Which I think helped us a lot! She was straight forward and said that we will not know anything for certain until our little boy arrives. She will do everything she can to make sure he is ok.  While that can be frustrating, the not knowing part, it was also a blessing.  Everyone else was making his condition sound like a death sentence. Dr. Osterdock did not give us a grave report, instead she simply said we do not know the outcome and we will hope for the best. She answered all of our questions and said that she has seen people with Hydrocephalus function just fine! WOW a piece of good news! We weren’t guaranteed that with our little boy but at least we had something to cling to.

The day Jonah was born was nerve wrecking. He had to be born via cesarean. It all went really fast, but when they took him out he cried! That was the most beautiful sound to hear! He cried hard and loud and he was so beautiful. Although we only got to see him for a few short moments, It was those moments that we remember the most.

During his surgery we were very nervous. Who wouldn’t be? in the first few hours of Jonah’s life he had to go under and endure brain surgery. We were glad he was in Dr. Osterdock’s hands.

Jonah spent almost a full month in the Nicu. Not due to anything with his shunt but merely because he was a preemie and would not eat on his own yet. After he started eating we were able to take him home. Scary! I think taking your first child home for anyone can be a terrifying experience but taking a child home that has a shunt is a different story. We were and are very, very protective of his head. Although now it’s a little hard to make sure a 2 year old isn’t doing anything crazy at all times. Jonah is definitely a dare devil. We were given a list of things to watch out for and we are very diligent about addressing any of his symptoms immediately.

Fast forwarding 2 years…. Jonah has had to have 2 other surgeries due to his shunt mal- functioning. While this is always a possibility, each time is as scary as the next. I guess that’s just what you have to live with when you have a child with Hydrocephalus. But we will say over and over again how much we love that Dr. Osterdock is his Neurosurgeon because anytime we had questions or were nervous, we did not hesitate to call. We are part of a Hydrocephalus group on facebook, and sometimes you see people try to diagnose there kiddos in the group. We always encourage parents that if you are in doubt, call your Doctor. Dr Osterdock truly is a wonderful Neurosurgeon and human being. And I can’t imagine handing Jonah over to anyone else.

Our son Jonah is doing AWESOME! He is so smart and has no mental delays at all. The only thing that he has to work on are his motor skills. He’s just a little bit wobbly when he walks. He talks up a storm and no one would ever guess that he has Hydrocephalus and has had to have 3 total surgeries.

We feel so blessed to have Dr. Osterdock. She is truly a God send. We are so grateful for our support system. We really needed it during the early days when we first found out about Jonahs medical condition and now.  Without our faith in Jesus, comfort and prayers from family and last but not least Dr. Osterdock, I don’t know how we would have gotten through and continue to go on this journey.