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20 wks pregnant and just was told my unborn baby has DWMI am worried and scared. I am 20 weeks pregnant and my unborn baby girl was diagnosed with DW. I Don’t know where to start. I think about it every ten mins. I don’t know what to do. Abortion has never been an option for me. I have four kids already and my first one has spina bifida. So I am not as worried about having the baby as I am woring about the unknown. They say she has DWM and a cleft lip. They say heart heart is strong. 7 comments to 20 wks pregnant and just was told my unborn baby has DWMYou must be logged in to post a comment. |
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I was always so greatful that we didn’t know my granddaughter had DW until she was born, I can’t imagine the waiting and wondering. Its wonderful that her heart is strong, sometimes heart problems are associated with DW so that is good news!! As for her cleft lip, that can be fixed
I wish I could give you solid information about what to expect but outcomes with DW vary greatly. Sometimes adults get diagnosed later in life completly by accident, having had DW since birth and never even knowing it. Other times babies are born with life threatening heart and other conditions and don’t do so well. The majority fall somewhere in between based on the families I’ve talked to. One similarity to you child with spina bifida will be the risk of hydrocephalus. Between 70-90% of people with DW have or can develop hydro. Hydrocephalus is treatable as well by placing a shunt into the ventricle to drain the excess fluid. Developmental delay is probably the most common condition, many families go through their states early intervention program for things like PT, OT, speech and many other available therapies. The sooner therapy is started often the better the results, my granddaughter was in EI at 3 months old. Even if nothing is apperent right away, having DW will put your baby girl at risk for delays which should be enough to have them come in and evaluate her once she is born. After that they will either start services or continue to monitor her development to be sure she doesn’t have any challenges. If I can try and help you with more specific questions or you’d just like to talk to someone who understands feel free to email me at Terri.Eldridge@dandy-walker.org, or call us at 877-DANDYWALKER. We’re always happy to try and help anyway we can.
Terri
I have Dandy Walker and Hydrocephalus. I was born in 1973 but not diagnosed till 1979 then shunted shortly after in 1980 with one re-shunting in 1995. I have 6 beautiful children. When i was pg wiht my oldest a test showed that she could possibly have an open neurotubal defect (such as hydro or cp)we did an ultra-sound but it showed everything was fine. They can do a surgery on the baby while still in the womb and put a shunt in it is amazing to watch the surgery being performed and if my daughter had the condition I would have at least looked into shunting pre-birth.
I have owned my own businesses and have been able to take control of my own health.
They just did a story on my daughter for the news paper we were
told the exact same thing hope this helps
http://www.mlive.com/news/jackson/index.ssf/2010/06/grass_lake_couple_raising_chil.html
Every bit of good hope helps. i just try so hard to stay informed, so I know what could happen. I go back for another ultrasound on July 12th. they say they will take a better look at her brain. I am scared of course, but what are moms for. thanks for the info. Every little bit helps.
C.Jenkins,
Don’t be scared honey. With all the technology today, she’ll do fine. Especially since they already KNOW her condition. My son was 3 weeks old before they discovered his hydrocephalus and shunted him. A lot can happen in that time. So being aware even before she’s born you are ahead of the game and I believe you’ll do just fine. I wish I had the medical knowledge back then (read my note to Heather) they have now. I’ll keep you & your sweet baby girl in prayer. You hang in there and know that God is not sleeping, He is aware of her condition and your fears, He can be your strength if you lean on Him. (Romans 8:28) God bless!
Heather,
It’s wonderful to hear about your “successful” life. My son was also born in 1973 (feb). He too has Dandy-Walker Syndrome, but I can’t really remember when I learned of it. He was diagnosed early on, but I wasn’t told until some time later when I saw a different neurosurgeon for other reasons. She was surprised I didn’t know. At the same time she questioned if he could have an A/V Malformation on the brain, but as time went on and his neurosurgeon did finally test for it, he does not have AVM. (Thanks to God). He does however, have hydrocephalus, CP, Scoliosis, blind in one eye, and at one point he was diagnosed with “Warfarin Embryopathy”, which is a bag of symptoms caused from me having to be on Coumadin during the early months of pregnancy. That diagnosis came when he was 10 or 11. He’s doing well, but does have to live in a group home and needs assistance. He’s in a wheelchair, he can walk with aid, but was never able to walk without either a walker or crutches and because of his scoliosis and cp, it was always difficult and painful for him. So he opted for the wheelchair. He also has a blood disorder he inherited from me and now has to take coumadin for life too. He had a peritoneal shunt put in at 3 weeks old, revised several times but pretty much gets several years between. 13 years between the last two revisions, the last one being in 2005. He gets confused easily and distracted by the tiniest noise or movement which doesn’t help when he’s trying to think of a question to ask or an answer to a question.
I hope all continues to go well with you. God bless you.
Heather
I am so glad to hear you are doing well. My daughter is 12 yrs old and was diagnosed at first ultrasound during my pregnacy. She had a shunt placed in at 3 months old. She also is doing very well. She had some gross motor delays while she was young but now has developed normal.She had 1 shunt revision at 9 yrs old. She is at her appropriate grade level for school and is a normal preteen. I was wondering if you have immune system issues because my daughter catches everything and has been hospitalized for pneumonia twice and hospitalized for other various illnesses. Also I always think of the future but did you have to take special precautions or talk to your doctors before you had your children and what part does the shunt have in a pregnacy? If anyone else can answer these questions please feel free too. Thanks!
hey…be strong,try to not worry to much because the child feels everything! I’m also pregnant and my baby was diagnosed with DW! unfortunately, in my country the health care system is not well developed so here i am trying to find about this syndrome. you must have now about 34 weeks of your pregnancy! I would like to talk more about what the doctors said to you, the exact symptoms of your baby, the chances they gave to him and the solutions. I heard is possible to shunt the baby before birth. The diagnose for my baby was agenesis of the inferior vermis. The neurosurgeon said that there are chances to develop normally, but i’m so afraid, even if i try to be strong and hope and pray for the best, I just want to know what to do if the worse happens! I heard about early intervention but i don’t know exactly what this program involves and i don’t know if here in my country exist such a program but i will try to inform more! If you want to keep in touch to see how our pregnancies evolve this is my email address: popitza_adelusha@yahoo.com