| Name: lola | Date: Feb 24th, 2009 5:54 PM |
| I have a daughter with spina bifida also who is 4 almost 5yrs old and you could never tell she has such condition. I have 2 typical children beside her and now pregnant again. Don't know if this pregnancy will be ok, I did have my 2nd pregnancy terminated at 20wks because of how severe the sb was also. ↑ |
| Name: loa | Date: Feb 24th, 2009 5:58 PM |
I have to cath her 3-4 times a day. I was terrified at first because she is a girl and to think i would accidently, nevermind don't even get started. I'm ok with it now.
i am however worried about cathing at school. I can't imagine someonelse doing this. ↑ |
| Name: jae | Date: Mar 12th, 2009 10:48 AM |
| i have spina befida and i am 59 years old i was wondering there is a website to have a social network for people or familes with children who have spina bedifa ↑ |
| Name: danita k. Williams | Date: Mar 25th, 2009 2:19 PM |
| Hello, my name is danita and I have a son that is 22 with SB. my email is dkrwilliams@yahoo.com. Contact me and we can set the 2 up to chat. ↑ |
| Name: natalie nixon | Date: Mar 30th, 2009 6:57 PM |
| hi im a 29 yr old with a 3 yr old if anyone would like 2 chat with me ↑ |
| Name: natalie field | Date: Mar 30th, 2009 7:08 PM |
| u can chat with me if your still looking at chatting with sum1 ↑ |
| Name: Kristina | Date: Apr 2nd, 2009 9:12 PM |
| Hi I have a 9 month old baby girl with spina bifida. ↑ |
| Name: kristina | Date: Apr 2nd, 2009 9:18 PM |
| Ioa i am with you. i also have to cath my daughter every 4 hours during the day and 8 hours at night. I to worry about having to do it when she gets older and is in school though the doctors have told me it wont be hard for her to learn to do it herself its still scary. ↑ |
| Name: graham | Date: Apr 17th, 2009 4:21 AM |
| i myself have spina bifida & find it very difficult to get a girlfriend who is able bodied and who understands my condition as soon as they see the wheelchair they think ur too much baggage graham ↑ |
| Name: bridget | Date: Apr 20th, 2009 1:37 PM |
| hi im 20 and i have spina bifida , any would like to talk to me my email is hurshbridget@yahoo.com i would talk to any about this ↑ |
| Name: Linda | Date: May 11th, 2009 4:14 PM |
| My daughter will soon be 18 and she has L5 spina bifida. My heart goes out to her because she tries so hard to keep it a secret. She always wears long pants to cover her braces and wears disposable pants.(I refuse to call them diapers) We went out last night and she had a bowel accident. She was mortified. How do other people handle this? ↑ |
| Name: Jean | Date: May 18th, 2009 8:02 AM |
| Hello, I had my baby 4 weeks ago and when she was born she had a 'cyst' on the back of her head which meant I had an emergency c section as the cyst was only picked up while i was in labour during an internal. 2 hours after giving birth a paediatrician informed us that she had a 'defect' which could be one of several things but did mention spina bifida as he thought membrane had escaped through an opening in her skull while in the womb. Obviously we were devastated and now face a very uncertain future. We have had one check up with the doctor and now have been asked to monitor the cyst etc and wait another 4 to 6 weeks to see if there any changes. She may have to have an MRI scan next to investiagte further. Like many parents i started doing research into the cyst, possible diagnoses and effects and am getting more and more anxious by the day. I worry that waiting 4 to 6 weeks is too long and that maybe something could be done in this time surely? Does anyone have any advise or similar circumstances? I would appreciate any info anyone has, thanks ↑ |
| Name: Monica | Date: May 24th, 2009 12:14 AM |
| my name is moica I am a 25 year old I was born with spina bifida ↑ |
| Name: Maham | Date: Jun 14th, 2009 11:11 PM |
| hi, I'm also 18 with spina bifida and if ur sons still interested I would be more than happy to chat with him. my email addres is fabulusunlikeu@aim.com please email me and let me know so can give u my screen name. thanks ↑ |
| Name: SANDY | Date: Jun 15th, 2009 2:08 PM |
| I HAVE A SISTER WITH SPINA BIFIDA, SHE IS IN HER 40'S I KNOW TO AN 18 YR OLD THAT SOUNDS REALLY OLD BUT SHE MAY HAVE A LOT OF POINTERS AND A LIFETIME OF KNOWLEDGE TO SHARE. MINI_ACRES@SBCGLOBAL.NET I HAVE A DAUGHTER 8.5 WITH SB ALSO. SHE IS THE JOY IN MY LIFE! ↑ |
| Name: angela | Date: Jul 29th, 2009 10:55 AM |
| im angela and pregnant and been told my baby has lumber spina bifida i got a mri scan next week to see how bad it is and i am scared a bit so would love to chat x ↑ |
| Name: angefahey | Date: Jul 29th, 2009 11:16 AM |
| hi all im pregnant with a boy they have already told me he has lumber spina bifida and sone fluid on the brain is anyone going though what i am cos im scared x ↑ |
| Name: eric santiago | Date: Aug 18th, 2009 1:31 AM |
| hey i'm 20 year old and im from chicago and i also have spina bifida ↑ |
| Name: Sandra | Date: Aug 22nd, 2009 12:33 AM |
Hi i have a 3 yr old daughter her name is stephanie and she was born with
S/B and i will like her to chat and meet new friends and talk about all ure experience with S/B we live in chicago IL her my space is stephaniegirl3@yahoo.com. ↑ |
| Name: Sandra | Date: Aug 22nd, 2009 12:35 AM |
| Sorry she is 13 years old not 3 sorryyyyy!!! ↑ |
| Name: Sandra | Date: Aug 22nd, 2009 12:39 AM |
| I dont know what is wrong with me or my computer im making to many mistakes her myspace is stephaniegirl13@yahoo.com Sorrryyyyyy!!!!!!Again!!!!! ↑ |
| Name: sessy | Date: Aug 22nd, 2009 5:13 PM |
| i have a daughter witht4 dose anyone else ↑ |
| Name: hannah | Date: Sep 22nd, 2009 6:05 PM |
| i am the child withn spina bifida in my family of course there is my aunt but she can walk fine so whos your kid? i might know him ↑ |
| Name: celesta olson | Date: Oct 6th, 2009 3:33 PM |
I am 17 and a junoirin high school... I really do have spina bifida and I've had it for all my life! I DON'T know anyone who has it and i would love to know someone around my age who has this........ my e-mail is: musiclover15000@hotmail.com! PLEASE
E-MAIL ME IF YOU FIT THIS!!! ↑ |
| Name: christine | Date: Oct 7th, 2009 5:42 PM |
Hello,
I hope you can help. I'm a 46 year old female. For two now I have had sever back pain. Today I went to the Doctors to have a Facet Joint Injection.
While they were doing the X-Rays the Doctor told me I have Spina Bifida.
I said I had a sister,whom I never met. She died of Spina Bifida before I was born. And I said are you kidding me? He said no. He said I have a rather big hole.
He said we would talk about it at my next appointment.
I have been reading online ever since. I have had the unbalanced feeling for many years. I felt it was one too many ear infections. In addition, in the past 18+ years I have felt my mind has been off balance too. I felt this was from given birth to children.
This has left me breathless.Is there any information you can give me?
Thank you in advance, Chris Stewart
castewart0391@yahoo.com ↑ |
| Name: Deb | Date: Oct 8th, 2009 5:22 PM |
I have a foster daughter who was born with spina bifida, I would love for her to find some other young adults that she could talk to , she dosent know any other kids with the same disablility, and in fact seems to not want to relate
with disabled peers. im stuck..
some of our issues are teen stuff, she's really made so much progress, she has many health issues, and Im very worried about the kind of adult she going to be come. ↑ |
| Name: Mayra | Date: Oct 14th, 2009 2:07 PM |
| I was born with spina bifida and i have a son already but was not born with it what are the chances of me having anothe baby and the other baby having it? ↑ |
| Name: Kelly | Date: Oct 31st, 2009 12:44 AM |
| Hi everyone, I'm Kelly 23 and have SB. I use a wheelchair to get around as I am paralyzed from the waist down. I am having trouble learning how to drive. I went through Rochester Rehab but the services were discontinued because the trainer did not think I was making enough progress. If anyone has any tips for me that would be greatly appreciated. Like your son missleyden I have not been in a relationship either and that definitely bothers me sometimes. ↑ |
| Name: Scared Mom | Date: Nov 19th, 2009 5:37 PM |
It's been a while since anyone has been here, I hope that my message will be found and may be I can receive some information or guidance.
I am 19 weeks pregnant and my baby was diagnosed with L5-S1 Spina Bifida one week ago. Never heard of that before but now I consider myself to be very educated with all the research I have done in one week. I am still waiting on the amniocentesis results.
I am scared to death and helpless. I don't know what to do. I don't want to terminate but I am considering it. I wonder if my Baby Boy will ever be able to enjoy his life possibly in a wheelchair and all that. Will he be able to date. Will he be depressed. Deep in my heart I can't stop his little heartbeat by having an abortion but I am confused and have so many questions.
If anyone could please email me I would so appreciate it but please hurry before I make a may be regretfull decision.
Thank you.
Scared Mom. ↑ |
| Name: Gina | Date: Nov 20th, 2009 11:16 AM |
| I am a 43yr. old female who was born with spina bifida. I have had numerous surgeries but I am still able to walk without any assistance, I can say it has been and is still hard to deal with. ↑ |
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