[veggiegirl]

Does anyone have any experience with Dandy-Walker syndrome? We got a call from our agency today about a baby boy born on my birthday (Monday- which is the same day our last match fell through). Here's a little info.

He was born at 32 weeks. 4lbs 3oz. He was taken by c-section early because of late prenatal care and some concerns on the ultrasound. Bmom was assaulted and that's how he was conceived. She didn't handle it the best and drank liquor 1-2/month in the 1st and 2nd trimester. I don't know if it was binge drinking or just a drink here and there. Also marijuana use and she did test positive for syphilis at delivery. He for sure has Dandy-Walker syndrome which appears to be more of a malformation than a disease - it's some type of brain malformation that it causes hydrocephalus (fluid on the brain) and can vary in severity. He is in the NICU and the social worker says he is very cute and "looks normal" - she was referring to no facial signs of Fetal Alcohol Syndrome when she said that. Mom had a rough childhood with some depression, anxiety, and bipolar but apparently takes no meds. This is in our hometown, too. I have a call in to our pediatrician, too, but haven't gotten a call back yet which is making me SO angry. We can speak to the baby's geneticist and docs, too if we'd like. Right now the plan is to wait until Monday since they want to do an EEG and are waiting for chromosomal tests. If we do adopt him, we'd get a state stipend until he is 18 or 19 (done with school). He has a tremor in his arms that they believe is due to the Dandy-Walker, not alcohol. I think the chromosomal tests are to rule out other issues. I have a feeling that in the end we will have to pass because this is probably going to be too much for us, especially with me working full-time and DD so young. Maybe the stipend would be enough for me to stay home since he will likely need therapy that just can't be managed with our work schedules... This is a tough one. I have a feeling the rest of the medical tests will really just show that only time will tell how the little guy does. Anyone have experience with this syndrome before?

[keekee1006]

I found a page that has a Dandy-Walker fact sheet, here's the link. http://www.cde.state.co.us/cdesped/d...erSyndrome.pdf

I hope this helps.

[aclee]

you might try cross posting in special needs too

[sbaglio]

I've taken care of 2 or 3 newborns/infants with DWS in my career. I was the pediatrician called to the delivery room for 2 of them, and followed them for a few days in the NICU. I can't say that I have experience with older kids with the syndrome.

I saw a quite severe case as a med student (and there's a range, as mentioned in the article keekee sent). I do recall the baby having to be born via C-section because he had a huge ball of fluid at the back of his head (around where the 4th ventricle is located). The child quickly went to surgery to have a ventriculo-peritoneal shunt (VPS) placed. It shunts the fluid from the ventricle to the peritoneum (lining of the abdomen), where the fluid becomes resorbed. That relieves the pressure on the brain. I saw the other infants with DWS as a resident and as a fellow. All three had VPSs.

Truth be told, I would be more concerned at this moment that the infant is being diagnosed, and being treated for congenital syphilis. It's pretty uncommon these days due to prenatal screening, but it sounds like the mother slipped through the cracks on this and other stuff. If the infant is infected, the timing of infection will be significant to the prognosis.

It's a tough situation. Hope you can make the best decision for your family.

[kara05kara]

Hi,
I worked with a student with this syndrome, and he presented as very Autistic-like. He did not develop verbal language, but did have 20 or so sign language signs. He was a true sweetheart, though! He walked with an awkward gait and always had his head to the side. I know this is just one, single example- but if I were you I would be prepared for the "worst case" of a child with some significant cognitive disability.

Feel free to PM if you want any more specifics...
Natalie

[Cjmeck]

I have very limited, although very personal experience with this. My first bio child, was diagnosed with this syndrome inutero. We were given a very grim prognosis. She would possibly never walk, talk, be independent. We saw many, many developmental peds over the course of my pregnancy, and very few positive stories were given to me. Ultimately, my daughter was stillborn. I just remember the doctors all along preparing me for a non-mobile, non-verbal child and it was quite terrifying. I don't have any experience parenting a special needs child, but I hope someone who does can give you their perspective. Goodluck with your decision.

[NoelleSin]

Our family was blessed with my little niece who was Dandy Walker affected. Unfortunately she was the worst case scenario, non verbal, wheelchair dependent, stopped bottle feeding by age two and had GT placed for nutrition. She had daily seizures while medicated unfortunately without the ability to stop the break through seizures. She did have facial deformity however she had a diagnosis of aicardi syndrome also so it is difficult to know the extent of which gave her the worst. She also was a preemie and very small birth weight. Our Tessa passed three years ago at five years of age, I hope this babies medical limitations are less severe. Good luck with your choice and God bless you.

[Linny]

I had an acquaintance who's daughter has DWS. It seemed to be more on the scale of 'autistic-type-behaviors'. However, as she's aged, she and her family are now faced with some serious surgical issues due to brain tumors. I agree that it might be best to consider having a 'worst-case-scenario' and go from there.

Good luck whatever direction you choose to go.

Sincerely,

Linny

[viannqueen]

My husbands cousin was also diagnosed with this diagnosis inutero. They chose to proceed with the pregnancy and put it in higher hands. Their little girl ended up being stillborn about seven months along. It was a really hard time for them. That's my only experience I've been exposed to with the syndrome.

[Nevada Jen]

Wow! I am shocked at all the bad experiences. My DD has it as part of her overall condition. Its a cyst that takes the place as part of her cerebellum. Its totally begnin. That said she is severely disabled but the dandy walker cyst has nothing to do with it. My neighbors kid also has it. His was missed until he was not talking. They put in a shunt at age 3.5 and he now speaks and is totally normal.

The severity of DWS is based on the size and location of the cyst (at least that is my understanding). I could tell as a non medical person just from looking at my dd's cat scan that hers was not a big deal sizewise but took the place of a part of her cerebellum. On my neighbors kid I could actually see that his brain was squished and then became unsquished after the shunt started doing its work.

I think the DW is no big deal but you should be aware that it might signify a bigger problem. I would say, between this and the syphilis, that you have a decent chance of this child being disabled.