Hi, My name is Jessica and my daughter is 2 years old. We found out she had arnold chiari type one malformation which is where the hole in your skull that connects with your spine is too small and fluid cannot drain. In result she had hydracephalus and underwent surgery 4 months ago. It is so nice to see that there are other people out there who are going through the same thing. It is nice to know that she will grow up and lead a wonderful life. Our daughter was developing at a slow rate, we had taken her to so many doctors from gastros to neurologist and they all told us she was fine. Her syndrome was diagnosed by an opthamologist and within 5 days we were at Primary Childrens Hospital having surgery. I am so thankful for our two amazing Drs. Dr. Scott Larson (opthamologist) and Dr. Riva-Cambrine (neurosurgeon). Your daughter is beautiful and I hope all continues to go well for you and your family. Thank you for having this site, it is such a great and wonderful support.

I am soo scare, my baby boy had his 9 months check up and the doctor told me that his head had grown too much from his last check up at 6 months. he is now at the 95th percentile and he was ay 75th at 6 months. Doctor want to see him again in 1 month and depending on that he will have to get a cat scan to see what is wrong (if something is wrong). I have been reading a lot about possible causes and I am in total panic. He is a healthy active boy, already crawling everywhere, talking, standing up, and adorable, I can't bear the thought of something changing that. Please some one tell me that everything will be ok! please pray for my boy, pray that next appointment he is ok and that his head didn't grow any anymore. Thank you!!!

Hi, i am 27 yr old women who had her first surgery in 1984 and my most recent surgery in 1999. I know and understand your story it has been 9 yrs since my last surgery. And I also had Meningitis at 18 months old. Now i have graduated from both Jr high , high school, and college. I also now have a 4yr old son,

Madison's story is amazing. I am a good friend of Zack's in NTW, and he is always talking about her and how much he loves her. But, my brother and I have had something that we can both relate to Madison about. When I was born, I was born late as most first-borns are, and I was supposed to be dead by the time I was 3. I am not sure what my condition was, but I was not supposed to be able to walk, talk, I would be forever blind, nothing. I started walking at 7 months, and was talking before that. I am now a healthy 15 years old, and talking, seeing, walking, everything the doctors said I would never be able to do. My brother on the other hand was born premature when I was 13. He was not supposed to live, since he was so underweight and premature. I believe his head was larger than normal, as well. He wasn't supposed to live for his 1st month. He was in the NICU for 3 months, then on a heart monitor for 3 or more after. He started walking when he a little under a year old. He still cant talk, but he has speech problems. He also has sensory issues, but we are working with him the best we can. Currently, he's 2 years old plus a few months behind him. He is extremely smart, though; for he does puzzles that are for 4-5 year olds and that he's not even supposed to be able to do. He has figured out how to use many appliances in the house, and he's the smartest 2 year old that I have ever known. He loves playing peek-a-boo and sword fighting in the aisles at Wal-Mart with the foam swords. I always let him win, too. I love him to death, no matter what anyone says. But, that's a summary of our story. Maybe it can help, even if it doesn't relate completely to Madisonâ??s story.

my name is cinthia im 24years i have a 2 year old gaugther her name is Kayla she was born with congenital hydrocephalus i was 8 months pregnate when they told us the also told us to have a abortion they said that she would not make it onese she was born. im so happy that Madison is doing so great. i would like to send u some pictures of my littel angel canyou please get back at me my e-mail is cynthi_8583@hotmail.com

What a lovely Madison. She is so adorable. I had my son early 24 weeks. and he had to get transfer to Children's hospital because his cerebral fluid was being clogged and he had the grade 4 and 3 IVH. We are praying for him. His name is Neiko. Connect with me at latreia_alexander@yahoo.com and I will send you pictures of him.

hi, A nice day madison, I hope that you are well and, and I want to know the latest news about "sabrina" To connect to you e-mail: hassanioussama@hotmail.com

What an amazing story, so glad Madison is doing so well! How is she now? We also go to Riley our daughter is almost 15 months and had cranio surgery for unicoronal in Jan of this year her doctors were Ackerman and Havlik. Please email me would love to talk to you

hi.I am oussama 23yers morocco from First, greetings to you madison and your family and all who contributed to the supervision of this site I read y our story was beautiful, but it was normal for me because I passed out where I was sick by cranial synostosis like our friend charlie I am now and thanks to God, like all normal people and have studied the baccalaureate Division for Experimental Science and Engineering currently studying air-conditioning.'ve Read on the subject Sabrina wish her healing, I hope to have all my prayers. I hope that the family of Madison this first missionary to be a bridge between us dating for the exchange of information

Thank you for the inspiring website. We just found out that our new great-grandson, due in January has hydrocephalus.

A very interesting site and story. What a darling little girl. I had a hard time reading much of this site, though. (NOT "thou"!) PLEASE proofread/edit your pages/posts before putting them up. If uncertain, use spell check and grammar check, or ask someone to do it for you. It will only improve your website.

I just have to start off by saying how beautiful Madison is and what an ANGEL. My son Cody is 12 years old and was born with hydrocephlus and seizure disorder he spent the first 9 months of his life at Rush in Chicago. I'm glad to read that many children are lucky to be able to have successful working shunts, unfortuntly they didn't work for Cody. His last shunt caused bowel obstruction at age 2. We were so lucky Cody's neurosurgeon did a third venticularostomy which has been a blessing. He is shunt free....I just thought this might help if some children have to keep getting shunt revisions. Cody saw a gentisis at the University Of Chicago on Aug,27th and told us he thought Cody probably has L1 Syndrome, he had blood drawn and we will find out in 12 weeks. Until now he has been undiagnosed, just a child known with hydrcephlus. I hope this will be helpful to some families.Our SPECIAL CHILDREN are a gift from GOD....

You already know this but i think Madison is so cute and spending a week with her let me get to know her and she is just the sweetest little girl and i love her to death

I just wrote you but, i forgot to put in my message that i would love to hear from you all through my email. And i would love to keep you updated on my story as well. kkrhines@yahoo.com

Hello, im truley touched by Madison's story. I have a healthy beautiful baby girl who is now 4. And im pregnant with my second, I found out last week Friday July 31, 2009 that he has hydrocephalus. I now have to go see a specialist every two weeks, just like you did. I have my first appointment with him today, and im just hoping and praying that everything goes okay, but just know that Madison's story gives me hope that everything will be just fine. I just want to thank you for coming out with your precious baby girls story, it gives all of us mom's hope to pull through a devistating time like this. THANK YOU ONCE AGAIN.

Our son Chase had Sagitial Synotosis Surgery at Riley 10 days before his first Christmas. Riley is truly an amazing place, he is doing great and quickly approaching his first birthday. This is our first baby and of course we were devistated when we heard the news of his surgery. He is now an amazingly strong baby boy and much to his mom's dismay climbed up the whole flight of stairs yesterday with dad close in tow. We thank God for all the simple things He provides us in life and truly cherish Him when he lifts us through times like we all have encountered. Best of luck to all those that read this site and your daughter is beautiful!!

Our daughter Ella Grace is now 6 months old and was born with congenital hydrocpehalus. She also lives with a seizure disorder. She has already had three shunt surgeries in her short time here. We have spent half of her life in the hospital. We are currently in the process of raising the funds to take her to Johns-Hopkins in Baltimore to be evaluated by the neurosurgeons and neurologists there. Someone had seen Ella's poster in a store and called me with your friend Christy's contact information. She thought I may like to talk with you as our stories are quite similiar. You have an absolutely beautiful little princess!

KEEP ON GOIN' LITTLE ONE!!! Happy wishes from everyone at Timeless Tattoos!

i cant believe madison has gotten to so big! shes growing fast and it sucks that i havent been able to be around to see her. i cant wait until i can see you guys, and i love you all!

My 9 year old was also born with hydrocephalus. Our story is actually very similar to Madison's. I think you are amazing parents for everything your have done! God bless your family and little Madison. You are truly and inspiration to all of us! If God brings you to it, he will get you through it.......and NO, DOCTORS ARE NOT GOD!

i found this page researching cranial reconstruction which we r looking thinking about doing for our son Austin. Madison is so sweet. It was so neat to see a family with baby pics that r so similar to Austins!! if u could email and i have the time i would really love to ask u some questions about the sugury Austin has had 12 surguries and is 2. He was born with hydrocephalus and when he was 1 was diagnosed with chiari malformation. thanks for creating this page it is great to know other people have been where we have God Bless your family thanx Melissa & Austin

i feel bad for her but i hope that she gets better. good luck

I am interested in the next Hydro Conference hinesfolcroft@yahoo.com

I too had a daughter with hydrocephalus. She is now 14 years old and doing great. She has her original shunt..To God be the glory. I so so many similarities in your story as in mine. God is the ultimate doctor. He is in control. We are blessed to have been giving these children to raise. I am praying for all the families touched by Hydrocephalus

I was two months old when I was diagnosed with craniosynostosis. My soft spot fused prematurly. I underwent head surgery and they had to remove a 6 in. long in. and a half wide piece of my skull. I am now 25 years old and doing great> my thoughts are with your family!!!! sarah-newberg,oregon