Bad news at 20 weeks... PLEASE HELP

awiggins011 · March 2015

On Thursday morning I finally had the moment I've been waiting for, to find out the sex of my sweet baby. It's a boy! It was one of the best moments of my life to see him flip, move, and give the ultrasound tech a hard time (he's not a big fan of being bothered). That moment was short lived though when the Dr. came in and told us that a part of his brain, his cerebellum to be exact, had not developed correctly and a piece of it was missing. She threw a bunch of big words at us and drew some confusing diagrams to try and help us understand. All that I could hear is that my sweet little boy has a problem. She told us that he has signs of Dandy Walker Syndrome.

We have been scheduled for ultrasounds, an MRI, and to meet with a genetic counselor in a month. I feel like this is some kind of sick joke to tell me my baby is sick and that I have to wait a month for any type of answers. Our family has been looking through the internet trying to find some answers but all I have is more questions. So i'm asking, does anybody know about DWS or have any experience. Any bit of information good or bad will help

megmansell · March 2015

I don't have any information but I just want to say that sometimes these things work out okay in the end. My sister was given horrible news at her ultrasound and after she had another and the MRI, it turned out everything was okay. I wish you and your family the best!

kyrenora · March 2015

I'm no expert, but I did some Google searching (research is hard when you're scared, so I thought I would try to help you out). What I found is that DWS will impair your little boy's muscle control as he grows up - but he will grow up. He will be able to live a long and happy life, but he may be clumsy or have some muscle twitches. I even read that in some cases, symptoms never even show up. I'll keep my fingers crossed that you're that lucky. At your upcoming appointments, they're probably going to try and establish the severity of your little one's condition.

It looks like the best site to start from is https://www.dandy-walker.org/

I hope this was able to help you in some way. Good luck.

claudia3059 · March 2015

I'm so sorry to hear about this. I don't have experience with DWS but my father had a massive stroke in his 50's and it wiped out the entire right side of his cerebellum. He never went back to surgery again but he was able to walk unassisted and work up until the age of 80. Mentally he is normal. He does have some trembles in his hand and his leg but that's about it.

I know this isn't the same as what your son may be been diagnosed with but hopefully it will help ease your mind a little as you wait for your next MRI.

camilleashleyyy · March 2015

Did the doctor seem concerned? Many people are told at anatomy scan that they find soft markers for different diseases, it is common. They told me my baby had a soft marker for DS and then made me wait to get a level 2 ultrasound. Although nobody was too concerned I was a ball of anxiety. If your doctor doesn't seem too concerned I wouldn't worry either. A lot of times they have to EXTRA careful and prepare people for the worst possible case. So more times than not things turn out to be completely normal. They may be doing it a mint from now to see of the cerebellum develops more or less because if it develops more that's a good sign that maybe ur baby's brain is just taking a little longer to develop. We don't all grow they Same anyways. Sending love and support to you,

camilleashleyyy · March 2015

Sorry for the many typos I'm on my cell phone.

Heather042188 · March 2015

Do not Google! It's always worst case scenario and very wrong and incredible information! I am awaiting test results for a genetic test because some things were found at our anatomy scan about a week ago. We have to wait about two weeks for the results and even those will not be definitive. However, we just met back with our midwife who is not as concerned. She says that there is a lot of misdiagnosis and suspicions with these scans because the pictures are grainy and shadows could make all the difference. I know you're going to worry, I did and do too! But! The worst thing for baby, is for you to be stressed! So give yourself a day or two, and then be a strong Mommy! God made us all perfectly, and with a plan! If everything turns out Okay, awesome! If something comes up, just know that God chose the perfect family/home for this baby and everything will be okay. You're not alone! *HUGS!*

inLOVEalready715 · March 2015

no experience or info, I just wanted to tell you that you're in my thoughts and prayers. Im hoping you get good results with your further testing. hang in there mommy, they don't know everything.

amichael89 · March 2015

My husband was born with part of his brain missing (can't think of it was cerebellum or what) and besides having a stroke from being in the birth canal to long (nothing to do with the deformity) he is super healthy today and hasn't had too many issues in life. He did have add and a slow time comprehending when he read when he was younger but would not know that today at all. Look for the silver lining and hopefully your little one will have a great outcome too. T and P your way.

kacdanz · March 2015

Sorry to hear this but from reading the responses there is hope! Thoughts and prayers for you and your sweet LO!

awiggins011 · March 2015

Thank you ladies for all your kind words and support it means the world to me.

awiggins011 · March 2015

camilleashleyyy said:
Sorry for the many typos I'm on my cell phone.

Not really. She just kept saying that we didn't know. They didn't even tell me I for sure needed counsoling until after I left

KatrinaPR · March 2015

No experience, just wanted to offer T&P for you and your family.

audi681 · March 2015

Thoughts and prayers to you and your family. I hope all works out for the best.

amhoover88 · March 2015

I have no experience but I'm sorry your going through this. T&Ps for you and your family.

mountaingirl5280 · March 2015

I can totally relate to what you are going through. At our 20 week scan, the Dr. Found an anomaly in the brain that would indicate that the two hemispheres had not separated...news he told us just minutes after finding out we were having a girl. We had to wait 2 weeks for another ultrasound and my DH and I were emotional wrecks those two weeks. Ultimately, our second scan revealed that everything was normal.

I hope your subsequent tests have the same outcome. I know the waiting is torture and it's hard to feel excitement for your little boy when there is so much uncertainty. Best wishes for you and your little one.

jessjeppe · March 2015

Also got bad news at 20 week scan. Hard marker for DS. Also waiting for results. It's been torture and still have over a week to wait. I wish you strength for the wait and all the best with the results!

ipsofacto599 · March 2015

Though they don't state this man's diagnosis, NPR just did a whole article on a man who was born missing a lot of his cerebellum. Here is the link to the NPR article. It is really is an inspirational piece. I hope it turns out the doctor was wrong in your case, but if he is not, it sounds like your baby has the potential to be happy and healthy nonetheless. My thoughts are with you. Hang in there.

babyd1102 · March 2015

Saw this article and thought of u. T&P

https://www.npr.org/blogs/health/2015/03/16/392789753/a-man-s-incomplete-brain-reveals-cerebellum-s-role-in-thought-and-emotion?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20150316

nhickling · March 2015

Keep us posted on how things unfold - you are in my Thoughts and Prayers, and I hope you get positive news here after your next few appointments!

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