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Late Term and Child Loss
Dandy Walker Syndrome?
I hope it is alright to post here, as I have not yet experienced a loss. If not, please let me know and I will delete this immediately. I found out the other day that my baby girl has Dandy Walker Syndrome. I'm 19 weeks and termination has been recommended, although I am undergoing more tests to see how severe the syndrome is/what her quality of life would be. Is anyone familiar with this? Or had to make the decision whether or not to terminate? How do you make that decision? If I do I'm terrified that I'll regret it or change my mind once it's too late. I love her so much.
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Re: Dandy Walker Syndrome?
((hugs)) I know you are in a terrifying situation, and I am so sorry for what you are going through.
I terminated a very much wanted 1st pregnancy for Trisomy 18 on 1/4/12. I was 18w6d. I love my baby more than anything, I just could not risk him/her suffering had we decided to keep the baby and allow the natural course of things.I do not regret my decision- I am so sad that I had to make it, but I know I did the right thing for me, my family and my sweet little one.
If you want to talk, I would be happy to e-mail with you. You can message me your info. Also here is a link to my blog- started 4 days post termination- it gives you a feel for some of those early emotions.
https://lifeaftert18.blogspot.com/2012/01/4-days-later.html
I just wanted to say that I am so sorry you are faced with this decision. I have no experience, and therefore no advice. I know there are several women on this board, though, that have had to make similar decisions. Only you know what's right for you and your baby. Regardless of whether you lose your baby or are forced to make a life altering decision that has the same results -- the process of grief and mourning your child is the same. No one will judge you here.
Sending you T & P during this difficult time. You are more than welcome here.
I'm so sorry you're faced with this decision. I don't know anything about Dandy Walker, but I do know people who have decided both ways when it came to a trisomy 18 diagnosis.
I'm not sure of what research you have done, but this is what I just found with a quick google search.
You are welcome here. I am so sorry for the news you've received. I'm not really familiar with this syndrome, but from what I'm reading online, it *might* be worthwhile to post on the "Special Needs" board to see if anyone has any insight.
We have women on here who have both carried to term and who have terminated, so they can give you more info and more resources. Of course, this will likely be something best decided with your medical team and your family. You have to do what is best for your little one and your family, and know that whatever your decision, you will always love your little girl immensely and that will never change, no matter what. Lots of (((hugs)))
? to Loss+M/PL+TTCAL+PgAL+PAL
PgAL/PAL welcome
Married the love of my life 7/11/09 - Our first baby, Peyton Mark, was born sleeping 10/25/11 at 33 weeks - Our second baby, BFP 2/4/12, welcome to the world Raylan! Holy Moly, BPF 2/4/14, please be safe and sound little one!
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I'm around this board, a bit, because my son is very sick, and could die at birth. (he has some belly/kidney/bladder issues, and then some) We're decided to carry to term (you'll see "CTT" used a bit) mostly because he has a twin sister in there who appears to be doing pretty well.
I could talk all day about this (email me if you want) because I've had several months to process this all, and think about things in 100 different ways. But it feels like we just found out yesterday sometimes. I'm still quite RAW, so I can relate to how you're feeling.
A few things... grain of salt with them all.... from what I've learned and have been told by "the top" perinatologists around... you have time. As you may know, 24 weeks gestation is "viability" so you have until basically that point to terminate should you wish. (check out the specifics if you think you're going to push that timeline... I've heard some gals have to schedule it out a bit, travel to another state, etc.) Make sure you're seeing a MFM/perinatologist for those second opinions. Push them. Don't let them TELL you how things are going go. Gather facts, learn all your options. How to get a Peri? A great way to find one in your area is either your OB, or ask the multiples board for a rec. (typically MoM's use them) Keep in mind they are doctors, but they don't know everything. And they're ALL likely going to have different opinions. lol. (boy did WE find THAT out!!!)
There's no right or wrong answer to this, and every situation is different. It's painful either way you look at it. I share this story ALL the time, because it's so applicable to anyone that's in a life situation where they've been handed the "short stick". It brings me GREAT peace. Welcome to Holland: https://www.our-kids.org/Archives/Holland.html
Having a special needs child is a WHOLE new world. So many factors, so many unknowns. Dealing with losing your child in utero? gulp. Another kind of impossible.
Also, there is several boards centered around this on BabyCenter. "Termination for medical reasons" and Carrying to term despite fatal prognosis.... they tend to be slower moving, but very informative. Not to state the obvious, but you are past the point of a D&C, you will have to deliver your daughter, regardless. Factor those emotions in. It's tough tough stuff, this I know. I've spent months planning my son's birth - from prenantal demise, to dying shortly after birth, to coming home to pass on hospice, to actually shocking us all (except momma, I have the most hope of all! lol) and having correctible medical needs. It's been a rollercoaster I would not wish on anyone. It's reallly, really hard. (plus I have a pre-schooler and the other baby in utero to worry about) I have found TREMENDOUS support thru the hospital and children's hospital I work with, they are nothing short of amazing. So if you're willing to make some calls and reach out, you will NOT be alone in this process.
And FWIW, I can help if you need it to. This whole board is kind and wonderful.
I wish you peace and grace with your journey. Stick around if you'd like, I say.
My cousin Kyle had Dandy Walker Syndrome and he lived a wonderful life. He passed away 4 days after his 17th birthday, but he was such a wonderful blessing to all of us while he was here. His situation was complicated because he got a severe infection after a surgery to place a shunt and it stunted his growth so he was very small. He also had cerebral palsy. He was in a wheelchair his whole life but he was truly happy. His laugh could fill a room and the lessons in love that Kyle taught us are irreplaceable.
A new aide was hired at the school where I teach this year who has been an amazing rock for me to lean on through my struggles with my daughter. We originally bonded because she told me about her sweet son,Adam, who has Dandy Walker's and he was the first person that I have ever met other than Kyle to have that diagnosis. Adam also has Down Syndrome. He attends public school in an inclusion class, is a truly happy and healthy kid. He walks, talks, an plays just like any other child. I believe Adan is 10 (but I might be off by a yet or two). Lisa is my friend's name and I am sure she would love to talk to you about her sweet boy. Feel free to PM me if you would like to exchange numbers or talk anymore. Good luck with your journey!
I have never heard of Dandy Walker Syndrome but my daughter had anencephaly (which we found out about at our 20 week ultrasound) and it is a condition that is "incompatible with life". We decided to carry her to term and she came on her own at almost 35 weeks. She lived for an hour and then peacefully passed away. I am happy with our decision and was so glad that I got a chance to prepare for her passing, as well as meet her and say goodbye. If you are interested I have a blog detailing my time pregnant with her and her birth/death. annabellelucille.blogspot.com
I am so sorry that you are going through this, and you are most welcome to this board. Please let us know if there is anything we can do. (HUGS)
Our daughter was diagnosed with 3 severe heart defects at our anatomy scan at 19weeks. We made the difficult decision to terminate our pregnancy. She would undergo 3 surgeries before her 2nd birthday. If she survived those, she would have had a 60% chance of surviving to her 20's and a 70% chance of making to past 10 years old. I've read other places that children with those conditions have a 50% chance of making it to their teens. She would have had to have multiple heart transplants, if they could find one for her. A lifetime on immuno-suppressant drugs could lead to leukemia. I'm an oncology nurse and I worked with patients with leukemia almost everyday. Not something I'm willing to do to my child.
We talked with our pediatric cardiologist several times, met with him for 2 fetal echos and did our own research. We needed to find as much information as we could. My MIL and FIL are nurses, as am I. We looked at it from the medical standpoint. We thought about what she would go through the first 3 years of her life. The developmental and physical delays she might have. The fact that she may never be able to do everything she ever wanted. If she wanted to be a track star or a soccer player or a basketball player...it would have been highly unlikely. We wanted everything for her.
The other side of it was that if we brought her into the world, she would experience so much pain. So much. The last 2 of her 3 required surgeries were open heart. They would be cracking open my 6 and 18 month old daughter's chest to try and fix her heart. Maybe it was to save us the pain of watching her be in pain. I don't know. All we knew is that we didn't want her to have to go through any of that.
My biggest fear was having to explain to her while she was dying at 6, 10, 15 or 20 years old, that we chose to do this. We chose to bring her into this world. Expose her to this pain. It's unlikely she could have carried children with a heart like that.
Not everyone agrees with our decision. But you know what? It doesn't matter what they think. This was our daughter, our decision. No one else's. It was our first decision as her parents. We stand by it. Do I regret it? Not in a million years. Does it make me sad that we had to say good bye? Every. single. day. Instead of her going through the pain, we did what we thought was best - became the bearers of her pain. We went through the pain of letting her go, rather than her be in pain here on earth.
You need to think about what is best for your LO. Don't let anyone sway you. Think of you, your husband and your child and what you want their life to be. What your lives will be like. Good luck. I wish you the best. Please stick around if you'd like. There is a ton of support here.
You've heard what I've done, not what I've been through.
If you were in my shoes, you'd fall the first step."
I have no experience with any of this, just trust in yourself and your DH. TRust in your decisions and know that you can and will make the best decision for your family. I am sorry you have to make the decision at all. You are welcome to post here, I hope we can support you in this time.
I second PP check out the special needs board to see the actual effects of living with Dandy Walkers.
Make sure you make your decision based on you and DH and on no one else. It is a decision that will be with you forever and you should be secure in it, no matter what it is. I am sorry you are living with this.
I just wanted to add that I posted my story, but I (and everyone on this board) will support you in whatever decision you make. Nobody can understand this type of decision until they actually have to make it and those of us who have know that it is a decision made only in love and concern for our LOs. Please just take your time in making a decision and don't let anyone pressure you either way.
You've heard what I've done, not what I've been through.
If you were in my shoes, you'd fall the first step."
***Congratulations to my TTCAL buddy Roxyttandme!! It's a GIRL!! Charlotte arrived on 9/29!!!!***
PGaL/PAL Always Welcome!!