Baby Taco: 4 months, 1 week
I have hydrocephalus with Dandy Walker Syndrome. In my life I have had 15 brain surgeries. When I was younger I had a seizure and when I was a freshman in high school, I had a stroke leaving my left side completely paralyzed. It has been over 10 years now since my last surgery and for the most part all is well.
I think I am pretty lucky. The friends I have now and even my husband have seen very little of my condition. No longer do I wake up in the middle of the night to be rushed to the hospital. I don’t see a nuerosurgeon anymore because as the old saying goes, “If it ain’t broken, don’t fix it”. Sure, I get migraines more than the average person. When the weather changes drastically, (which is happening often in Florida), I feel it but overall, my condition does not keep me down.
When my husband and I decided to get pregnant we saw a high risk doctor. I am also a big girl and honestly, the doctor was more conceded about that than my condition. I went through my pregnancy just as a normal woman would. In the back of my mind I feared my shunt breaking down and having to get surgery, but it never happened.
I was assured by my doctors that Taco would be ok. That hydrocephalus was not hereditary. All his ultrasounds came back perfect. His brain was ok. Well, when he was born things were definitely not ok.
We all know he was in the NICU for 2 weeks. When he was born he has a brain bleed which is typical for a premie. Countless tests after tests were performed. He was hooked up to all sorts of machines, wires, IV’s. They performed not one but two spinal taps because he kept spiking a fever and they did an MRI to see how everything looked.
What they came back with was that Taco was born with a Dandy Walker Varient. Where the entire back of my head is a fluid filled cyst, he had a thinning vermis in the 4th ventricle of the brain. They told us horrible things like he was going to grow up to be special needs, he could still develop hydrocephalus and that he was going to have a hard road a head of him.
We had doctors upon doctors not only tell us about Taco but would also ask me a ton of questions. As far as they were concerned they just found a new medical finding to put in their books. They continually poked and prodded Taco so they could prove that what I have is hereditary.
I felt awful. I kept thinking that I would have never even gotten pregnant if I would have known he would be like me. But then the craziest thing happened, he got better. He got stronger. When the doctor said there was a chance he would develop cerbal palsy, he kicked and became more coordinated. His head size is still in the normal range. Eventually the doctors stopped coming around because Taco was proving them wrong.
We have one more neruologist appointment next month and then I’m done. I am not having him feel the way I did. Throughout my childhood, I felt like the science experiment. Student doctors would crowd around as the surgeon would talk about me. I hated feeling like that. Feeling like a bag of flesh for them to cut rather than a person. I know Taco does not have hydrocephalus and I pray he never has to ever get surgery. I never want him to feel like there is something wrong with the way he was made.
I worry about my own health. I worry that I will have to get surgery again. My husband has never seen something like that. He has never had to sit and wait. Have his wife come out with big bandaids on her head. He’s dealt with some pretty great migraines and a couple of parinoid catscans but nothing like surgery.
I am afraid of dying. I know we all are but I don’t want to have to leave before my time. I don’t want a surgery to happen and I end up more like a potato than a person. I don’t want to leave my husband and Taco alone.
When I talk to my friends and family about it, I always joke. I make it seem less serious than it actually is. I don’t want them to be scared or to know how scared I really am. I know this is just me thinking way too much. Everyone is fine. I think I’m just pissed because Florida has been 90 degrees for the past 2 days and this morning it must be 70 outside. My head hurts.