Approximately one out of every 30,000 live births results in some form of Dandy-Walker syndrome. With the development of hydrocephalus as the most common indicator, children with this disorder are believed to experience a chromosomal defect that leads to facial and cranial malformations in addition to neurological complications. Among these, your child may experience central nervous system complications, as well as complications involving cleft palate and even vision, kidney, liver and pancreatic disease.
Once your child has been confirmed with Dandy-Walker syndrome, it is important to development a healthcare team that will carry and mange your child's various health conditions under the umbrella of a life care plan. Because the exact cause and origin of your child's DWS development is not known, the healthcare team will want to assess those issues involving complications that arise from genetic defects at chromosome 3, 9, 13 and 18.
In many cases of DWS, there are multiple genes involved. If your family history provides some indication there is a risk for the genetic disorder to develop, you may want to meet with a genetic counselor to ascertain any preliminary complications along these particular genes.
Because hydrocephalus and neural tube defects are the most common in children with Dandy-Walker syndrome, this may be the most immediate concern for the team of neonatologists who should be prepared to assist in your child's care at the time of delivery. In the days and weeks after birth, the care of the neurological complications will be the most important as they will lay the foundation for the future child growth and development for your infant.
While unfortunate, many children diagnosed with Dandy-Walker syndrome do not survive many years, primarily due to the complications arising out of the various genetic complications. While there are some healthcare issues that can be managed with the right pediatric team of specialists, most children with DWS simply can not manage to feed, immobilize and live independently. As the parent of a child with Dandy-Walker syndrome, it is important to understand how each genetic complication may adversely impact the lifespan of your child and find ways in which to manage those aggressively.
Published by Christine Cadena
Working on a graduate degree in psychology, Christine has both professional and educational background in health, wellness, insurance, and health finance. Finance expands to all facets of health and insuran... View profile
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5 Comments
Post a CommentMy youngest brother has this disorder. The doctors said he wasn't supposed to live, so he's our personal family miracle. These kids can be a huge hand full though... My brother has good and bad days, somewhat like the behavior of a 3 year old. He has been the same for a while now and he's already 9. Just love him to death though :)
Hi I'm a 14 year old who has to do a report on the dandy walker syndrome . I need someone with the syndrome or someone who knows someone with the syndrome to interview. So if anyone could help me ,
I'd just like to ask a few questions that need to be answered .
Please email me at xlilroxystarx@hotmail.com
thanks (:
I have a teenage nephew w/ dandy-walker who has made temendous progress over the years with help from a diverse group of resources- pediatrician, nutritionist, special ed. and therapies, etc. He's a joy to be around, very loving and sweet. I hope the genetic components will continue to be researched- wouldn't trade him for the world but the lost potential and uncertain future for these kids is sad and scary.
i have a child 3y having dandywalker . he has development delay but he is happy and can not walk or speak.
I have never heard of this disease. Bless you for sharing so much useful information that is oftentimes difficult to locate.