Hi everyone! I am currently 27 weeks and my unborn daughter was diagnosed with Dandy Walker Malformation. I was looking on advice or tips from anyone who has experience on this. Thank you in advance for your help!
Hi Susan:
I am sorry your daughter has been diagnosed with DW. I know you are scared and have many questions. I so remember the devastation I felt when my daughter Lexie was diagnosed with DW Malformation. I don’t know if you have had a chance to visit my blog - but my testimony and Lexie’s story is there. http://fuzisisters4.blogspot.com/search/label/Dandy%20Walker%20Malformationhttp://fuzisisters4.blogspot.com/search/label/Dandy%20Walker%20Malformation I hope it will encourage you. Your daughter is a blessing - a beautiful gift from God. Every life has a purpose and your daughter’s life will bring you many blessings and lessons. My advice to you is to hang on, love your daughter with all your heart, and wait for the blessings that will unfold. It will not be easy, but you will receive gifts. As far as medical treatment advice, try to find a physician that has dealt with dw. If your daughter has hydrocephalus, then of course, a pediatric neurosurgeon. The advice I received was to treat the hydrocephalus as soon as possible after birth to allow my daughter’s brain to develop. My biggest advice about medical treatment is to become as informed as you can and then, be all means, become your daughter’s advocate. Doctors are human and can make mistakes. Know what treatment you daughter is receiving. Don’t be afraid to ask questions. If something doesn’t sound right, ask more questions and get a second opinion.
I’m praying for you and your daughter - please feel free to contact me anytime.
Kristi Flanagan
----- Original Message -----
From: susan6151mailto:dws-cpt11237@lists.careplace.com
To: flanagan_5@msn.commailto:flanagan_5@msn.com
Sent: Wednesday, December 03, 2008 9:33 AM
Subject: [dws] New diagnosis
Hi! Our daughter was born with a Dandy-Walker malformation and hydrocephalus, we found out about it after the first ultrasound at @20 weeks. I went for an ultrasound once a month after that so they could check how she was developing and measure the fluid in her ventricles. Her fluids increased everytime, but not a whole lot. We found out about a month before she was born that she also had a bowel obstruction. She was born at 34 weeks, my water broke. I had a c-section which really wasn’t as bad as I had feared. Grace Miracle weighed in at 5 lbs 9 oz, not bad for 34 weeks! She had surgery to repair the bowel obstruction at 2 days old. If it hadn’t been for that, she would’ve gotten her shunts alot earlier. She was in the hospital for 11 weeks in the NICU, and had 6 surgeries. Most of them could be considered small, but they were still surgeries. They tried a VP shunt but because of her stomach problems it wasn’t draining. After a while they were able to put in a VA shunt. VP shunts drain into the stomach (peritoneum), VA shunts go into the atrium of the heart. If you were to look at her you wouldn’t believe it was the same child. Her head was never really big, her forehead was kinda wide until after her shunt. She has a slight protrusion in the back where the malformation is (the doctor refers to it as a cyst), but it’s not very noticeable. She’s 7 1/2 months now and is doing outstanding! Her lengthy hospital stay was mostly related to her stomach surgery, not the hydrocephalus. She went to see her neurologist a couple days ago, he said she’ looked great. We’re going to start her on physical therapy soon, she’s not sitting up yet, and could be falling behind a little. She’s such a beautiful blessing in our lives, God made this little miracle and He knows what He’s doing. I looked up Dandy-Walker in the beginning, and alot of what I found scared me to death. I think we’ve been very blessed that Grace is turning out way better than alot of the stories I’ve read. Don’t fear the worst, it’s not a death sentence. Trust in the Lord with all your heart and lean not on your own understanding.(Proverbs 3:5) God is in the business of blessings and miracles. God bless you and your baby!