Home      Members List      Register Now!
  #1  
Old 07-11-2008, 07:41 PM
cailin
Guest
 
Posts: n/a
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 what life would be like etc.
Reply With Quote
  #2  
Old 07-14-2008, 03:24 PM
saffsmom saffsmom is offline
Junior Member
 
Join Date: Mar 2007
Location: niagara region
Posts: 2
Default Prenatal Diagnosis

hello,<br> to be honest it's very hard for the doctors to give really accurate info before your baby is born. even after your detailed ultrasound they will still be giving you "maybe's". not what you want to hear i know. <br> every child with SB is different. do lots of research and reading. learn about everything from the most serious cases to the most lightly affected. <br> ask lots of questions about the surgery and hospital stay (for the baby). this part at least the docs can tell you about for sure. <br> <br> my daughter saffron is 2 years old. she has myleomeningocele (repaired at 22 hours old) and while she has enlarged ventricles (and had while in utero) she does not have a shunt.<br> ** you will often see people dicuss the "level" of the sb...this can be both the place on the spine where the defect occurs and the level of function a person has as it correlates to the spine**<br> saffi is L4(ish)...typically kids at L4 can walk on their own with ankle bracing, saff on the other hand is unable to stand unassisted. she crawls, sometimes uses an wheelchair and has just gotten new braces called RGO's with which we are hoping she will learn to walk with the aid of a walker. <br> aside from the not walking saff is pretty much a typical toddler. she is healthy and happy (most of the time) and a smart cookie!<br> <br> remember that the doctors do NOT have all of the answers at this point. much about SB can not be determined until after the child is born or even later as the baby begins to develop and learn new skills. <br> life with a child with spina bifida is complicated, sometimes stressful, scary, sad and frustrating. it is also exciting, joyous, fun, loving, an adventure for sure! in fact day to day life is less different than you are no doubt imagining.<br> <br>
Reply With Quote
  #3  
Old 07-15-2008, 03:33 PM
cailin
Guest
 
Posts: n/a
Default Prenatal Diagnosis

Thank you so much for giving us insight. We are still awaiting to hear when we will have the ultrasound and MRI. Every second feels like a lifetime. Thank you again.***
Reply With Quote
  #4  
Old 07-23-2008, 03:22 AM
Chaddsmum
Guest
 
Posts: n/a
Default Prenatal Diagnosis

Hi There,

I know exactly what your feeling. My husband and I have been there too! We found out at 22 weeks that Chadd had myelo and hydro. We went through endless tests and ultrasounds, but ultimately you will not know the extent of the sb and hydro untill your little one gets here. Our little boy was born in Sept, he is now 10.5 mos. He is amazing, he crawls, stands up at the edge of the coffee table, and just started to take steps while you hold his hands (extremely exciting). His level of functioning is l5 left side l3-l4 right side. He has two AFO (braces for his feet and legs) and they do wonders for him.

*

I remember being devastated when we found out, and even grieving a little becuase our little one wouldn't be "normal"but* what my husband and I quickly discovered was that "normal"is whatever you make it to be.* BEcuase physiotherapy, lot's of doctors apps, occupational therapy, MRI's ultrasouns etc.....were not "normalL"or part of our typical day to day lives before Chadd. HOwver once you start living it, it becomes your life, and it becomes "NORMAL". If there really is such a thing as normal. Anyway one of the best decisions my husband and I made was to have, love and cherish our little boy. He is great and I would not want him to be anything else than him. We love that little guy just the way we would have if he didn't have any health problems.

*

My advice to you is do lots of research, reading, referrals from your local children's hospital. Go visit the NICU where you little one will be spending lots of time in the beginning. I do want to pass on a really great book that talks about everything you could ever wonder to do with SB- "Children with SB " A parents Guide edited by Marlene Lutkenoff, it's wonderful.

My e-mail address is showing please do not hisitat to e-mail me. I know that I craved every bit of information and insight that I could get, so if I can be of help I would love to.

Sincerely Anita

Reply With Quote
  #5  
Old 07-29-2009, 02:51 PM
Amnada
Guest
 
Posts: n/a
Default

Hi,
I am in a similar position as you. I am 23 weeks pregnant with my son, and was told he has lower lumbar/upper sacral open spina bifida. I've had a level II ultrasound, MRI, amniocentecis as well as talked with genetics, pediatric neurosurgeon and a doctor who runs a spina bifida clinic in the rehab center.
I cannot give you the answers, but I can tell you how helpful it has been to hear from other people what they have been through. It has made me feel less alone and manageable.
I have also ordered some books to help to get as much information as I can.
If it helps to know there is someone going through the same things as you, know that I am here.
Amanda
Reply With Quote
  #6  
Old 11-12-2009, 10:50 AM
amitydayDum
Guest
 
Posts: n/a
Default Prenatal Diagnosis

It is definitely in the muscle. When I was researching last night I kept looking for a less serious excuse but then I read a couple articles on compartment syndrome that had "symptoms" sections that sounded like someone told me to write down exactly what I was feeling....and then plugged it into the article. Very discouraging. But, I am hoping it is mostly related to my jogging and that if I get it under control I can get back on the bike without a problem and without reoccurrence. I also hope I dont have to see a DR about it.....the best diagnosis and treatment involves sticking big long needles right into your muscle.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump



All times are GMT. The time now is 05:19 PM.


Powered by vBulletin®
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.