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Old 07-11-2008, 07:40 PM
cailin
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Default Prenatal Diagnosis

Hello, my husband and i have just found out at 21 weeks pregnant that our baby has bilateral club feet, myelomeningocele and hydrocephalus (13mm as of yesterday). We have requested an MRI, neurologist consult and a more detailed ultrasound to determine the extent of the situation. Has anyone had a similar experience? We are so lost and only want the best for our baby, are there any specific questions that we should ask the doctors? We would love to hear from anyone who has any input into what life will be like etc.
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Old 07-25-2008, 04:00 AM
My Emma My Emma is offline
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Default Prenatal Diagnosis

Hugs to you mom, I'm sure you can use them.* You're doing a great job reaching out to*try to get a grasp on what may come.* My daughter was dx'd at 6-wks-old (sorry, I don't know her measurements).* She was shunted the following week.* She is nearly 4 now and you wouldn't be able to pick her out from*amongst her peers as being any "different".* Because she was at risk of*having a delay, we regularly saw a physical therapist, speech therapist and occupational therapist during her first year of life (moreso the physical therapist with gross motor development).* At age one she was discharged as she was meeting all her milestones.*

I know I don't have to tell you how hard it is to know that your precious little baby has to already be faced with challenges (it just doesn't seem fair, they are so innocent!) but they will surprise you with how well they take these life challenges on.

I know there are some other mom's on the Cafe Mom forum: Hydro Momma's where their babies were dx'd prior to brith -you might get some good info there as well.* Any help I can offer, please ask.

My best to your family & that precious little baby!!!*

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Old 08-18-2008, 01:44 AM
Tidysmom Tidysmom is offline
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Default Prenatal Diagnosis

Connected

I definitley send my prayers and blessings to you and your husband!* We just had our son, Titus last December and he has Spina Bifida and Hydrocephalus too.* My encouragement would be to you remember that the Doctors are not all-knowing and they always tell you the worst case senario. Better safe than sorry sort of thing, but we found that they were wrong with many things about T's diganosis, they simply cannot tell everything by an ultrasound.* They said T would never walk,*urinate or have bowel movements on his own, and he probably had brain damage from the H.* He is doing well since birth and they is no sign of brain damage, he urinates and eliminates all by himself and he is the happiest baby I have ever seen!!!!* Take things with a grain of salt and remember that everything has a purpose and this little one will be unique and a joy!

Hope this helps and let me know if there is anything else I can do for you!!!



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