Hi there everyone, I am a mother to a baby girl who is now 4 months old and at 2 weeks old was diagnosed with dandy walker syndrome. I got told the worst like so many of you at 26 weeks pregnant, and although it has been difficult, Sara (my daughter) is doing great. She has not met many of her milestones yet, like smiling laughing reaching for things or even focussing yet, but I am very hopeful that she will eventually get there. She has also got a lot of difficulty feeding and her breathing is very laboured – we have an appointment at ENT (ear nose and throat) next week so we will find out what’s going on with that. But she is thriving and coming along slowly but surely.

I have found it very difficult getting information about this in the UK and even many doctors and specialists seem very vague when giving me a prognosis or talking about what it means for Sara’s future. I was wondering if there is anyone else in the UK who is dealing with DWS and if there are any british support websites/ groups? Anyone I talk to about it has no idea what it is, and has never heard of it. I feel like I have studied the syndrome like a university degree over the past 6 months and I still don’t fully know what to expect!

Here is a picture of my daughter and I when she was born and a more up to date one. One thing I have noticed about these children is that they are all incredibly cute!

I am 25 weeks pregnant and we were told that our son was diagnosed as a dandy walker variant baby yesterday. He is missing the vermis and has no other symptoms as of now. All of his organs are working perfectly and as of right now he has no hydrocephalus. At first we were told he wouldnt live, but when I went for a 2nd opinion they told us he could be perfectly it would just depend. We wouldnt know until he got here in November. Is there any advice anyone can give we were devastated at first but after getting the 2nd opinion we feel so much better. I would just like some advice and maybe some information, organizations and all that.

Hi,

I was surprised to find this forum after ALL these years.  My son is now 37 years old.  He was born with Dandy-Walker Syndrome, but I didn’t know about it until he was much older.  My neuro-surgeon didn’t feel I needed to know until HE thought I could handle it.  I really don’t know why doctors think they have a better idea of what you can handle and what you can’t.  My belief is that without the knowledge of what you’re dealing with, how can you learn to deal with it?

My son is living in a group home and is doing very well.  He is learning disabled and has many physical disabilities as well, scoliosis, hydrocephalus, blind in one eye, CP.  Plus he has an inherited blood disorder and is on coumadin for life.  God has blessed me with a wonderful young man.  We’ve been through alot through these many years, but as long as he stays healthy, and continues to do what he needs to to stay that way, all is good!  Occasionally he requires a shunt revision, but there was 13 years between the last two.  Hopefully we’ll get as many or more from this last revision was was done in 2005. (5 yrs & counting!)

I would love any “chat” with anyone else who is either just beginning this journey, or any who have been on the path along with me for years.

Hopefully this post will bring some kind of “hope” to some who are just beginning…

My son is 11 months old and has seizures. He can’t sit, roll over, reach for things, etc. I’m wondering if anyone know of any positive stories. I’m trying to hold out hope for my son.

Thank you.

my daughter abigail was never diagnosed with DWM untill last year. when she was younger i kept telling the doctors there was something wrong because she was developing very slowly at age two they did tests and realized she had a DWM. she doesnt walk or talk but she has the most beautiful smile and she is always happy. i have felt very alone because nobody around me has ever heard of DWM. when i saw this website i cried its comforting knowing there is people out there going threw the same thing my family is going threw. i would really like to talk with families that are dealing with the same thing i am. my email address is nathanielz_ma@yahoo.com

Hello my name is Kathy and i just thought I should share my story it might help some parents that think they are living the worst time of there lives. On Nov of 2007 I gave birth to a baby girl who I named Jacqueline, when i was 23 weeks pregnant they informed me my daughter had Trisomy 21 (down syndrome) and had intestinal problems that had to be attended to right after birth my daughter had  3 surgeries in the first 2 months of her life she had what was called dual duadnal atrecia, she was fine for about 4 months then she had surgurie again for the same reason she had a total of 6 surguries by the time she was 17 months of age, at her 6 surgurie she went into septic shock and had multiple organ disfunction she  past away at the age of 17 months on May 24 2009. At that time I was 3 months pregnant and shortly after I found that my child had enlarged ventricals, the doctors couldn’t tell me how or why or what this condition was, ultrasound thru ultrasound they keept getting larger readings of the ventricles but told me that most of the children are born completly fine. My daughter was born on Nov 14, 2009 she seemed beautiful more than perfect, the doctors told me they needed to do a cat scan on her, they took her and shortly after they brought  me the results, the neurologist stated “your daugher has Dandy Walker Syndrome” I didn’t know what that was how or in what ways it afected her, he explained it to me but my mind was some where else the only thing that I kept repeating in my head was  “SYNDROME”, will I lose my daughter again?  will my daugher go through multiple surgeries? my older children still hurt from there sisters death asking me, Mommy will god take Jocelyne to? my heart was broken once again into tinny peaces, and I didn’t know how to put it back together. As of the results I  did not want to admit my daughter had dandy walker, i wanted to run look for second opinions for someone to tell me she was perfectly fine, she was refered to early intervention but I refused to admit my daughter needed any type of help,  the wonds of loosing my dauther made me deny to my daughter the help and assistant she needed, I refused to get her evaluated for therapies. One day as I observed my daughter I realized she was 4 months and she could hold her head up, that I would give her tummy time and she wouldn’t pull her self up, that she would do anything to stand a bit,  she was just there lying down, thats when it hit me and I realized that I was dening my daughter the right to depend on her self and that YES she has Dandy Walker and that YES she needed help, that is when I realized that I needed to think about today and not yesterday, to think about a good future for her and pray for the best.

On November 13, 2010, we will be running the Chickamauga Marathon & Half Marathon in order to raise money for the Dandy-Walker Alliance. Although it will be a challenge for us to complete these races, we will be especially motivated by the excitement of knowing that it will benefit such a worthy cause. We will be supported by Holli & Tommy Berg and their son Tommy Jr. They are an amazing famiily who’s strength and dedication to thier child and this cause have truly inspired us. We are working on getting more runners to join us in raising money for Dandy-Walker research. I’ll keep you posted on our progress!

Hello,

My daughter was told two months ago that there is a concern that her baby may have DWS.  She is currently 37.5 weeks pregnant, and was asked during her weekly check-up today, if she knew what delivery mode her Maternal and Fetal Medicine specialist wanted her to go through.  The OBGYN indicated that if the baby does have DWS, that delivering him naturally may cause additional malformations.  Was anyone else told this?  We’re thinking we should error on the side of caution and ask for the c-section.  Does anyone know if my daughter can request a c-section to avoid any additional complications?  Any feedback you can provide is greatly appreciated!

Would anyone like to share some insight or any information on their experience with DWS for an article

I am worried and scared. I am 20 weeks pregnant and my unborn baby girl was diagnosed with DW. I Don’t know where to start. I think about it every ten mins. I don’t know what to do. Abortion has never been an option for me. I have four kids already and my first one has spina bifida. So I am not as worried about having the baby as I am woring about the unknown. They say she has DWM and a cleft lip. They say heart heart is strong.