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Dandy-Walker Syndrome
Posted by dandywalker to Disease/Illness, Sep 24, 2009 10:55pm
Dandy-Walker Syndrome is a brain malformation of the cerebellum. There has been limited research conducted in this area. Most parents, who's child is diagnosed in-utero, are encouraged to terminate the pregnancy because that's what the text books teach. We were one of those couples who were diagnosed at 18 weeks gestation and encouraged to terminate because they could see NO brain on the ultrasound. Our son had seven brain surgeries and five other surgeries before he was 3 1/2. He just started "regular' Kindergarten.
Together with another family, the first non-profit organization, The Dandy-Walker Alliance, was formed in hopes of raising awareness and providing hope to other families. In 2008, Congress passed the FIRST House Congressional Resolution on Dandy-Walker, #163, to help raise awareness. We've spoken to over a thousand parents of children with Dandy-Walker over the past few years, as well as many adults who have Dandy-Walker. It would be great to bring awareness and to really gain a better understanding of the broad spectrum of affects that individuals have from this syndrome. Check our our web site at www.dandy-walker.org
Thank you for your consideration.
mandyhugo
Sep 25, 2009 9:17am
I also have a child with DW. I would love to have other people educated on this. Unlike the story above my child was not diagnosed until the age 9 months. She was not meeting milestones and that made the doctor look into it. I had at least 5 ultrasounds and not once was her condition dectected. It would be awesome if this show touched on this condition so many more people would know about it.
sroure
Sep 25, 2009 9:17am
Our son was also diagnosed with Dandy Walker when I was 18 weeks pregnant. We were strongly encouraged to terminate the pregnancy. We persevered through countless depressing sessions with doctors but on December 29, 2008 our son was born fully functioning and aware with no physical defects besides the cyst on the back of his brain. He is missing the lower portion of his vermis which has delayed the development of his trunk muscles along with some sensory input issues but otherwise you would not know he has a condition at all.
tikievin
Sep 25, 2009 10:14am
My son who turns 3 in October was diagnosed when he turned 1. Why was it not detected when I was pregnant till this day I don't know. However yes it is true the people we have spoken to when they were diagnosed while pregnant doctors have encouraged to terminate the pregnancy. My husband and I have spoken about this if our son was diagnosed while I was pregnant we don't know what we would have done. Now seeing him smile and knowing he has the ability to live a normal life with our help makes me happy I was not put in that predicament. He is my life. He is now starting to do things a 1 year does. He is crawling on his knees and the orthopaedic has said he will walk within in a year. (WE ARE HOPING). He has seizure from time to time so he was put on seizure medication. He understands everything we say. With a little help everything is possible.
cureno402
Sep 25, 2009 11:29am
3 yr old daughter with DW and was not diagnosed till 1 Her doctor was leaing towards CP cause of her tightness... and was shocked when the MRI was done... and the doctor said she had no idea cause she looks "normal" DW has many faces...
allardkelly
Sep 25, 2009 11:58am
Our daughter was also diagnosed at the 18weeks ultrasound with Dandy-Walker and we are due next week. We too were met initially with many in the medical community reading from their textbooks and making grim predictions. Thankfully, I found the online community of parents and their encouraging and diverse stories. The more awareness the better for the Doctors and the patients, but especially the children. The brain is an amazing organ and there is always hope.
krwag
Sep 25, 2009 12:01pm
I had never heard of this before. My niece, Amy, just sent me the link and I am very interested to learn more about it. I am a psychologist who works with parents and children and I also have a strong interest in brain development and function. I will vote for this idea with great enthusiasm. And thank you for doing what you have all done for your children! Karen in Edmonton Alberta
donnabrad
Sep 25, 2009 2:20pm
My daughter was diagonised with DW on my 18 week ultrasound, we were advised to terminate but we didn't as no one really had any Information. She turns 18 this year and is doing great, no problems at all.
ECFmom
Sep 25, 2009 2:40pm
My son was diagnosed during a routine check up when he was 4 months old, and due to a fever and abnormally large head circumferance the doctors suspected menengitis. He was taken immediately to the ER, and it was revealed he had hydrocephalus and DWS-variant. He has received physical, occupational and speech therapy, and he is almost age-appropriate for his gross motor goals and making great progress with fine-motor skills. He has had no cognitive delays. He also has a hearing loss that may or may not be related. The spectrum for DW is so great, I can't imagine why so many parents are advised to terminate their pregnancies. Our child is one who did not have any worst-case scenarios play out. The world needs to learn much more about this!
annabelldj
Sep 25, 2009 3:13pm
My son was diagnosed also at 18 weeks. He his now just over 2 years and has no signs or symptoms associated with his DW. He is very verbal and well ahead of the curve in both growth and milestones. We are the lucky ones. I can't believe it when people say that their doctors pressured them to terminate. DW has so many different outcomes and that you never know what will happen with the child. I think a show on this would educate both doctors and parents alike on DW and it's many outcomes.
amandaleah83
Sep 25, 2009 7:10pm
Like the founders of the dandy walker alliance that have been amazing help to me and my family my son was diagnosed in my belly at 18 weeks by ultra-sound as having Dandy-Walker Malformation. When we were first diagnosed like most they advised we could terminate the pregnancy; however our doctor did advise that the effects could be so wide in variation that he would reccomend we wait until after the amnio was completed. I think a program that would get the information out there would be amazing. There are so many people like us that searched and just read medical information that scared us to death, and it was the dandy-walker alliance that gave us hope. The Doctors could really help provide hope to America....
danette
Sep 26, 2009 9:09am
Our daughter was also diagnosed during my pregnancy. We were also very strongly advised to terminate the pregnancy. Even with the diagnosis & the various health needs she has, she is very smart, loving & is loved by every single person that meets her. She is fabulous. Nobody in the medical field knows anything about Dandy-Walker Malformation or Syndrome. I talk about her condition as often as it is needed and it is never recognized by anyone. This medical topic could really help inform people in general as well as help doctors steer people to groups that can answer questions regarding the diagnosis. There is SO much negative information available, in regards to DWS, on the internet- but those are mainly doctors who are publishing what they have had to deal with (the worst-case-scenario case of the disease). I really, really think this would be a great topic to talk about on The Doctors.
grammytoella
Sep 26, 2009 1:18pm
Our grand daughter was diagnosed on when she was 3 days old and ready to leave the hospital. After the neurosurgeon place her shunt he told us, "she has Dandy Walker with a cyst..blah, blah blah." I put it that way because he said it so fast and turned around and left so quickly that we were stunned after she has Dandy Walker we lost all bearing. My daughter was sick and still in the hospital 30 miles from where her little girl was. No one had heard of it at the hospital, not one nurse could find us an answer so we went home to do some research. That is a very scary subject online. Please help us relieve fears and answer questions for those who are newly diagnosed. Help us bring awareness so that when I say our 'normal' looking 5 year old grand daughter has Dandy Walker, that's why she doesn't talk, that's why she screams, that's why she's still in diapers then people won't look at her funny or think we're horrible because our grand daughter 'acts up or is unruly'.
paulsmom
Sep 27, 2009 12:36pm
Like mandyhugo and tikieven my son was diagnosed at 9 months old. He was in NICU for a week and exhibited all signs of Dandy-Walker but nobody looked into it further. I do know that my son is an extremely happy child except for weather changes which I attribute to the cyst. He is presently in inclusion pre-k class and enjoying school and being with friends. He is the joy of my husband and I's life. I wish that more people (maybe even medical staff) would be aware of Dandy-Walker Malformation so that for those who are not diagnosed in-utero the diagnosis can come quicker than a few months to a year down the road.
daheirnckx
Sep 27, 2009 3:50pm
I too have a child with DW. We were give the diagnosis at my 18wk appointment and were also give the option to terminate. At that time, the Dandy-Walker Alliance was in its early stages and the internet did not give us anything encouraging. Today, my son is doing amazing! The issue I have with the medical field is that they don't have enough information for parents. They don't see all the success stories! My child's doctors are not familiar with DW and often work with his developmental challenges but do not know which are caused by DW or which could be associated with prematurity (he was also born at 32 weeks). It would be wonderful for a popular show like the Doctor's to help get the word out about our Dandy-Walker kiddos!!!
sjlikener
Sep 27, 2009 5:29pm
My "miracle grandson" was diagnosed with Dandy-Walker Syndrome before he was born, at his 18 week ultasound. His parents were not given much information, and very little hope. They were told to go home and think about their options-termination being one of them. Thanks to their great faith, and lots of prayers from family and friends, they chose to give their son a fighting chance. They chose to love him and vowed to give him the best possible life. He is now 14 months old, and is the most adorable, sweet little boy anyone could have asked for. And he is progressing exceptionally well. He is a happy, lively, busy little guy, and most people don't even know he has Dandy-Walker. As we have learned from other families, who have a child with this syndrome, these children can live a very productive, normal life. We need to get information out about this syndrome, so that others who encounter this syndrome in the future, do not go through the devastation we went through, and know there is a lot of hope and a lot that can be done to help these children grow up to have wonderful lives. This syndrome is not hopeless, and these children deserve life.
snowbear
Oct 1, 2009 12:25pm
I am 28 years old and had seen a neurologist for sycope, and dizzy spells, and what I felt were "palpatations" that landing me in the E.D. MRI (5 months later!) reveled it was Dandy Walker Variant, but my neurologist, who is very nice, but not a specialist in this area, didn't even give me info. She just said to come back when symptoms worsen. I'm in pain or uncomfortable almost everyday and I have to be my own advocate to find SOMEONE who specializes in this rare disorders in adults, which is even rarer. My neurologist even said she doesn't know a specialist. I'm stuck and feel it's an impossible feat. Please do a show on Dandy walkers and include adults, so I can learn something and be pointed in a right direction.