I’m an 18 year old mother of a 3 1/2 month old beautiful baby boy. We just retund home from the hospital about 1:00 AM this morning. We were at Cedar Siena Hospital, in L.A. I took my son to the doctor on 8/17 and they noticed his large head, sent us for tests. We found out he had fluid on his brain, and needed a shunt put in to drain the fluid.We were all shocked after surgery when they told us he has Dandy Walker Syndrome, and the very scary shunt would be permanant. I’m very afraid for him! I’m worried about what happens next?
Missy-Mo (CALIFORNIA)
My daughter was born with a Dandy-Walker malformation that we found out about at the 20 week ultrasound. She has hydrocephalus and a VA shunt (goes to the heart instead of the stomach).She spent 11 weeks in the NICU after she was born, and had 6 surgeries there. She also was born with a bowel obstruction so that made the shunting an ordeal. She’s 16 months now and a beautiful miracle of God! She only seems to have been affected in her motor skills, mostly her legs. She’s finally gone from combat crawling to hands and knees. I pray she’ll be walking by the time she’s 2 but if not that’s ok. She was also 6 weeks premature so that accounts for some of the delay. Yes, her shunt is lifelong. But not the end of the world by any means. Shunts can last years or minutes, it just depends. Grace hasn’t had any problems with hers. Her recent revision (surgery to fix shunt problems) was only to lengthen the tube to her heart because she was outgrowing it.I looked up Dandy-Walker on the internet when I first found out she had it. Bad idea, scared the sh** out of myself! I fully expected the worst. We have been so blessed with Grace, so blessed! God doesn’t make mistakes, He knows exactly what He’s doing whether we understand it (or approve of it) or not.You have to trust Him. He loves you and He loves your son.Put everything in His hands and you’ll be surprised at what He will do in your life.God bless you and your baby, and know that all things happen for a reason.
Missy:
I have a now 7 year old daughter with Dandly Walker Malformation. She has two shunts, one into the ventricals and one directly into the cyst. When she was diagnosed (app. 25 weeks gestation) we were told to expect the worst of the worst as she has the truest malformation (none of the vermis). I want to give you hope - she is developing normally. Yes, we’ve had many surgeries and had many trials but she is such a blessing in our lives. Hang in there - if you would like to read more about Lexie’s story you can go to my website here: http://fuzisisters4.blogspot.com/search/label/Dandy%20Walker%20Malformation
Please feel free to contact me if you have any questions.
Kristi