- FEATUREDBy redheadcp
Welcome to the Spina Bifida Kids Group! We know that if you're reading this, you've probably recently been told your child has (or may have) Spina Bifida, Hydrocephalus, Chiari Malformation, Lemon/Banana sign, or some combination of these. Your doctor may have mentioned mobility problems, incontinen5
39
- By WorriedMama23wI am devastated and sad both for my “vision of my daughters life” and what she will have to endure. i just had my 20 wk ultrasound yesterday. Everything seemed fine. All the measurements were on track, none of the measurements were low. The tech had a hard time getting images of the spine and said “5
0 - By Urooba96uI want to ask all the moms who have SB babies . How is your pregnancy with them. Do they move alot or less and kicks more or less? And what happened after birth about their movement of legs and lower body. I've been told by my gynecologist told me that my baby is not be able to move below waist. Bec100
- By novascotiasbmomnOur original accomplishment thread seems to have been locked out or unable to be moved up in the post order on the page, so I wanted to start a new one to keep the good energy flowing. I also wanted to drop the links in here for the Beautiful Babies Threads that are so awesome!! https://community.421
- By queenrilly
So, even though nothing would’ve changed if I knew except maybe doing a hospital birth, all the ultrasounds that I didn’t want to do in the first place were useless anyway because they didn’t see anything wrong with her spine. My baby was born last Friday with Myelo. Just a tiny lesion at the very862 - By Surillo89
Hi everyone ! I’m new here. I recently got my test results back. I’m just curious if anyone else got a similar results to me? I don’t know what to except . I know everyone has a different situation so I would like to hear your story. My results : AFP Value ng/mL Value 153.3 Standard Range ng/m40Advertisement | page continues below - By Heathhhh
Hi y’all, I just had my baby boy a week ago. I noticed a bump on his back but didn’t think anything of it/thought it was part of his spine. He had two pediatricians examine him at the hospital and he had his newborn pediatrician appointment last Friday. None of the doctors mentioned anything’s abo60 - By GenevivemomgHellow i seek for your help! My son is 2 years and 5 months, has SB and Hydrocephalus,shunt rev 3x and ETV CPC He had no issues since when he was 6 months old when the 3rd shunt rev was done, along with the ETV! We dont have a clinic for SB where i live it is only a neurosurgery clinic..last year i40
- By JasmineLondonUKjHi all, I wonder if somebody can help me. What are the chances that the kicking and leg movement deteriorate as pregnancy continues? Am 23 weeks today and my baby girl was diagnosed SB with lesion starting at L3/L4 - S3, with chari II. Thankfully she has full leg movements with no clubfeet and v250
- By FathimarahimharryfBaby with sb L5 doing army swimming type crawling. Did she change it to normal crawling? She have all movements in both feet and legs but lack of sensation mostly in left feet . She using right leg mostly.. if she intrested she will stand when I put her to stand .very lazy baby.. please give advic60
- By CT_mom
Okay, now that most schools have started, or are about to, let's see the cuteness!50Advertisement | page continues below - By ghadeer87
Hello everyone! Hope you all are doing great with your little heroes So, my son Ali has been using Zipzac (indoor tiny wheelchair) since he was 8 months old, for those who don’t know Zipzac has two Sizes and we’ve had them both Ali is now 8 years old and he no longer fits in his large size Zipzac30 - By Weebaby5wMy baby is 1 year old with singnificant physical delays. We don't have answers yet. I have noticed his sacral dimple is a bit deep but our pediatrician says it is closed so nothing to worry. He also has 2 line/ scars just above the sacral dimple. Are these lines normal? Can we still do ultrasoun100
- By rrlaura
Audra is almost 3.5. The only effects I can see from her tethered cord (dethered at 3 weeks old) are in her peeing and pooping. She's never had a UTI, but the few times I've tried to potty train her, she just doesn't seem to care and I can't tell if it's willful or something she can't help. She neve20 - By ctedder
*UPDATE* I just talked to the neurosurgeon and he doesn't want to do a spinal fusion until Naomi is 3 (March 2024). He wants to give time for Naomi's bone to get stronger, but he doesn't want to wait too long so the kyphosis gets even worse. He said that plastics recommends a wound vac. I mentio41 - By SheehannsHello everyone! I'm currently attempting to sell my Giger MD therapy machine but I'm struggling to find a suitable platform for it. eBay doesn't seem to be the best fit for this type of product, and rehabilitation centers have shown no interest. Have any of you had experience selling or purchasing t00
- By amyhudd1014ahi mommas!! i was just wondering have any of you ever sold or bought therapy eqipment online. as i am struggling to find the right places to advertise a giger md therapy machine i have for sale xxx pic attached for your info so you know what kind of aid it is110
- By aginger11aAny and all tips needed and appreciated for a big pressure sore that appeared on my sons heel. We removed his braces after a long day of wearing them, and it looks alarming !50
- By FTM122023fPlease excuse the long post as I’m still wrapping my head around everything… This is my first pregnancy after a successful IUI. Im 34 and my fiancé is 47. We were TTC naturally for close to two years then decided to look into why we were having a hard time. After testing we found out I had uterine330
- By amyruszkiewiczaHey all, E is starting kindergarten in 2 weeks and she’s still leaking between caths (per urologist 5x a day). I do really want her to avoid going to school in diapers, so I’m looking for some pads I can put in her undies, or even some absorbant undies (like Thinx). The problem I’m hitting is that s30
- By MinahilFahdmHi everybody. My DD is 2 years old and was diagnosed with SB at birth. Now when i think of another baby my heart really sinks.. anyone here who can help me out who went through the same as to do/don’ts of conceiving in order to avoid NTDs in further pregnancies and delivered a healthy baby.. this wo50
Follow your baby's amazing development
