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I hope it is okay I post here, Spina Bifida

aliciablair22aliciablair22 member
in Special Needs
I had an elective gender scan on Monday. I got a call from my OB today telling me I needed to come in ASAP but wouldn't elaborate on the phone. I had my husband come with me. The Dr. told me that the results of the gender scan get sent to a high risk Dr. in Omaha. The Dr. paged my Dr. on Wednesday at the hospital to tell him he is concerned with my ultrasound and the risks of Myelomeningocele. I have to wait until Jan. 8th to see the perinatologist. I feel like I am having a panic attack. I don't know what to do. There doesn't seem to be anything I can do until my appointment. I don't know how to prepare, what to say, how to feel. Does any one know what I should expect?
Image and video hosting by TinyPic Lilypie Third Birthday tickers Lilypie Pregnancy tickers Expecting Logan James (Spina Bifida) May 2013. Follow our journey: http://littleloganjames.blogspot.com/
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Re: I hope it is okay I post here, Spina Bifida

  • leslieanne03leslieanne03 member
    I am 35 weeks pregnant with our son Carter who is confirmed to have Spina Bifida.  My biggest piece of advice is educate yourself before your appointment.  Visit sites that are .org and .edu where you will get facts and information on all levels of severity.  I also visit Spina Bifida Connection a lot too.  This site has parents with children who have Spina Bifida along with people who have it themselves.  This will help you understand what the drs are saying at your next visit, and arm you with questions.  By educating ourselves, we found a spina bifida department at the children's hospital in our city, and were matched up with the neuosurgeon there to plan out Carter's care months before his arrival.  Also, just a warning, remember you will be given a lot of worst case scenario.  We were warned Carter may have no leg function when he was diagnosed at 20 weeks, but I can attest that is quite the contrary, Carter is quite a kicker and has shown a lot of leg movement on every ultrasound we have had.  Good luck!  If you have any questions or need to talk to someone going through it, I am at Leslieanne03@gmail.com
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  • realisticdreamsrealisticdreams member
    Our 3 year old has lipomengiomyelocele.  How far along are you?

    Their are options for the prenatal surgery and a close friend of ours was screened at 2 different hospitals but ended up not being a candidate.  So I would read up on the prenatal surgery prior to the appointment.  I can try to answer any questions you have so just send me a PM on here and i'll give you my email.  I can also put you into contact with my friend, her little girl has myelomengiocele and she is about 9 months old.  She initially didn't have hydrocephalus but when she was born it was obvious she would need a shunt.  So she had her initial closure surgery, and shunt placement plus 2 shunt revisions.  She is about 8 months old or so now and is awesome.  
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Jenny952Jenny952 member

    Hi, my DD has spina bifida and hydrocephalus.  I got the diagnosis at my 20-week u/s and was totally devastated.  It was the worst couple days of my life and I had a hard time enjoying the rest of my pregnancy.  But I have a beautiful 13-month old now who is the most amazing baby ever.  

    There is a lot of information out there about SB, a lot of it is outdated.  Be wary of what your perinatologist tells you about SB and make sure you get an appointment with a neurosurgeon (NOT neurologist) who deals with SB.  There is an SB moms group on babycenter.com and has a ton of information.  There are also a lot of moms who have blogs, which was very helpful to see their kids are very normal and happy kids.  

    Good luck at your appointment.  If you are confirmed with SB, feel free to pm me and I'm happy to share all kinds of information about it! 

    Lilypie Second Birthday tickers

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