Looking for some insight or hope
My sister found out this week that her the baby she is carrying
has Dandy-Walker Syndrome or Trisomy 13. I’m somewhat
confused by it all but have been doing some research online. I
don’t seem to find anything positive or what the chances are for
the situation to not be extremely severe. She is very worried
about the quality of life this child may have and how long it
would live after birth because of everything the dr’s have told
her. She is doing a second confirmation ultrasound on Monday.
I’m just afraid she will not have enough information or know the
right questions to ask. I’ve see some very positive outcomes
where the children did have a good quality of life with some mild
impairment. We are a family that does not believe in taking
away life and this is a very difficult and morally conflicting
decision, but it seems the dr’s are pushing her towards
termination of the pregancy. Is there any harm in her
continuing if she wants to take the risk? All of the bloodwork
she had up until then showed the baby was doing great –
measuring two weeks ahead and the baby’s heartbeat has been
good too.
Can someone give us more insight or tell us what the right
questions are to ask? I just want her to have all the info
she needs to feel like she has made the best decision about
how to proceed.
My granddaughter, who is 2 1/2, was born with Dandy-Walker Varient and hydrocephalus. She does have some delays but also is overcoming more and more of them everyday. At the moment her biggest challenge is communication. She is just starting to be able to say a word or two, and that can be frustrating for her at times but over all she is a very happy social little girl. It has taken her longer to do most thing that babies do but shes catching up in her own time.
I can’t speak at all to Trisomy 13 but I will tell you that as far as Dandy-Walker goes your sisters situation is similar to most others. Doctors often give the worst case scenerio, almost always the option to terminate is offered or suggested. In my opinion that has to do with the lack of research. They can only speak to what has been published in medical journals, which isn’t very much. I think its great that you’ve come here looking for information. Families living with DW can give you more practical information. If you look on this website at the “Education” tab you’ll find results of a survey that was conducted to create a teachers guide to Dandy-Walker. It has some great information that families provided about outcomes, what their children struggle with and what they don’t. Bear in mind that outcomes in DW vary greatly, with some patients being affected hardly at all while others are more severely challenged, most seem to fall somewhere in between.
An important thing for your sister to know is that even if her baby has some developmental delays, there is help. Every state has an Early Intervention program that provides services for young infants and toddlers. Many families here will tell you that it made a big difference for their child. Under the “Resources” tab at the top of this site you’ll find a link to listings of all sorts of services for every state in the US.
Some questions she might consider asking are if there are any other malformations, sometimes malformations of the heart and limbs can be associated with DW. If they think possibly Trisomy 13 have they considered an amnio for genetic testing? Hydrocephalus is often associated with DW, have they mentioned hydrocephalus to her? If hydro is present she may want to consult with a pediatric neurosurgeon so she has some good information about that. Hydro can be caused by many different conditions and affects 1-500 people. Its very common and very treatable, I know neurosurgon sounds scary but its really more common than most people realize. I have never heard anything that indicates that continuing a pregnacy would be a risk to the mother but if that is something she’s concerned about she should absolutly ask her Dr.
I’m sure others will share their experiences with you as well. If you have any other questions or there is any other information we can help you with please feel free to continue asking questions either on these boards or email me directly @ Terri.Eldridge@dandy-walker.org. I hope you find the answers your sister needs to make the best decision for herself and your family.
Your Sister can carry a child with trisomy 13 to term, many have. There are many options and much support. Sadly many Doctors do pressure to terminate…Paternalism? Not Cost effictive for their group? Or Fear of Lawsuits if there are complications? Who knows, but the child is safe in mothers womb. Visit and read many stories of those who have met their children. Termination is legal, but not always the best decision for those who oppose abortion.
Whether the child will live briefly or a bit longer, NONE of the parents who have carried to term regret meeting their children, read these amazing stories…..and the love, courage and hope within many of them….
Please have her contact the living with trisomy 13 community. There is always hope with this dx.
My child is now 9 yrs. ( Natalia) living with FULL trisomy 13… she is a delighful child.
http://livingwithtrisomy13.org/album14.htm
If I can offer you any support answer your questions or help you in any way, please let me know.
ThereseAnn
Site Facilitator
http://Livingwithtrisomy13.org
Hi,
My daughter Gracie was born with Dandy Walker Malformation 19 months ago. Hydro is secondary to dw so when the cyst is controlled she does’nt have hydro. She is reaching her milestones nicely. She can speak like a scholar, has many words and she uses some short sentences. She is not walking yet, she crawls like mad and cruises around the furniture. She had 6 ops to date, where the put in a device called a shunt to drain the cyst, the most recent op was in March ’09 so we are very excited about the break she is having.She meets her neurosurgon every 3 to 6 months for check-up’s and he says she’s doing really well. She is the most adorable little girl, although i have 2 other children who were born healthy, and they love teaching her new words. She really is amazing, always smiling….I always say this but if i could change anything about the way she was born, or about Gracie at all… i would’nt change a thing. I was told to expect some development delays but so far so good.
she goes to PT, OT, ST twice a month and all departments are really delighted with all her progress. This site is great because their is not enough information about DW and i think the best way is to live it and communicate it.
Please tell your sister, that i wish her the best of luck for whatever the future holds. Feel free to comment or email me if i can support you in any way
Maxine Carey
Hello
I am a grandmother of a little baby boy named Kayden. When my daughter was 22 weeks into her pregnacy when the doctors diagnose the baby with fluid on the Cerebellum. They advised my daughter to terminate the pregnacy but my daughter wouldn’t, couldn’t do it. She is a very faithful person and she believe if God wanted him he would make that decision. So Kayden was born on March 6, 2009 he had alot of medical problems as well as the fluid on the Cerebellum. He only lived for 23 days. But my daughter and the Kayden’s father had to make the heart breaking decision to let him go. If Kayden would have lived he would have lived on machines. The little brain he had left was dying so that is why my daughter and Kayden’s father decided to let him go and be the little angel he was born to be. But let me tell you even though it was heart breaking the 23 days we had with him was wonderful, he brought so love into the world he changed all our lives.
So if your sister decides to continue with her pregnacy and there is that chance that her baby could make it. But for some reason (pray to God it doesn’t happen) the baby doesn’t make it, at least she can say she gave the baby a chance and enjoy the moments she has the baby.
Tell your sister our prayers are with her.
If you have any questions, please email me.
Pam Bennett
hello everyone my name is jasmina i am 21 my baby girl named sariah was diagnosed with fluid on the cerebellum what the doctors call dandy walker syndrome i need some edvice this is really hard she has had difficulty eating and she does some funny arches and i just need someone that has gone trew the sames things to help me out ?