new baby sbina bifida/hydrocephalus

[cadon's mum]

hi, my name is lorraine and i have a 10 week old son with sacral/lumber myelomeningacele and hydrocephalus he had a vp shunt inserted at 4 weeks and his back was repaired at a day old. i would just like to say that i am so glad that i have found people that understand what we are going through as here in the u.k i have been unable to find anyone to talk to who has a child with s/b. we are so scared about the future and what this means for him but believe that with loads of love he is gonna get through this o.k. he has good movement in both his legs at the moment and i have to catheterise him once a day. he his just adorable and my other 3 children think the world of him. he has a tethered cord wich ends in the region of s2/3. what does this mean?
he also has an arnold chiari 11 malformation with herniaton of the cerebellar tonsils. how will this affect him?

[Dodger67]

Hello and welcome! :happy065:

Short answers to your questions:
Tethered chord. Many people never have any problems from TC. But you need to be aware of any sudden neurological changes; worsening of incontinence or paralysis, persistent pain, etc.

Chiari malformation. Again most people never have problems but if it happens it can involve vital reflexes such as breathing and swallowing.

[Dodger67]

P.S. I almost forgot something important: We want piccies!
There is a photo album on your profile page.

[LisaJoy]

Welcome, Lorraine. And congratulations on Baby Cadon!

Dodger's right, Chiari usually doesn't become symptomatic. The majority of people with SB have it, but many do not (I do not). If symptoms develop, they can do decompression surgery. That's one of those "we'll cross that bridge when we come to it" things.

Practically everyone with sb has some degree of cord tethering, and it often does eventually require surgery if symptoms develop. The spinal cord is supposed to float freely; in tethered cord, it does not. The stress on the cord can cause nerve damage. Whether or not surgery is called for eventually is very individualized. So this is another "cross that bridge when we come to it" thing!

In both cases, as with the shunt, you just need to familiarize yourself with the signs of problems developing.

Lots of moms in your shoes on this website, including several in the UK, so hopefully you'll make some friends and get the support you need!

[Summer25]

Welcome Lorraine! Tether cord basically means that the spinal cord is being pulled on by usually scar tissue. It can cause problems with walking, bladder and bowel, headaches, and back pain. Arnold chiari usually presents itself in young adults with spina bifida. I started having symptoms of neck and shoulder pain at the age of 16. I started PT and it stopped. I am now 25 showing symptoms of what I think is chiari once again. Basically my symptoms now are just neck pain and pressure in the head. I have been getting headaches as well. My neurosurgeon however, does not want to believe that is what it is and is trying to pick apart each symptom one at a time. Decompression surgery is major brain and spinal cord surgery that with me will be avoided at all costs. It can also cause sleep apnea, numbness in the limbs, swallowing problems, and eye issues. Like Lisa said it is one of those "Cross that bridge when you have issues," type of thing.

[joybell322]

Hi! & Welcome! You're going to love this site. I encourage you to go through all the old threads. I have found so many answers to my questions there. I have a daughter, 6 years old, with SB in the L4-5 region. I too was scared at first and am still worried every now and then, but I can say that it gets easier to deal with. You'll learn so much his first year! Enjoy him and your other children as much as possible! Please post pictures when you can. We all LOVE pictures! Lots of love!

[cadon's mum]

thank you for welcoming me, i have so many questions i really don't know where to start. how will i know if my sons shunt blocks? what happens if he falls over and bangs his head? will it malfunction then? how can i tell between a cold and a shunt block? what is urodynamics? how can i prevent his bottom from being so sore!! my list is endless i know that i will get to know all of these things in time but i feel i need to know it all now! i have also read that i should not dress him with anything that has hard seams (denim etc..) is this true?

[Summer25]

thank you for welcoming me, i have so many questions i really don't know where to start. how will i know if my sons shunt blocks? what happens if he falls over and bangs his head? will it malfunction then? how can i tell between a cold and a shunt block? what is urodynamics? how can i prevent his bottom from being so sore!! my list is endless i know that i will get to know all of these things in time but i feel i need to know it all now! i have also read that i should not dress him with anything that has hard seams (denim etc..) is this true?

Shunt malfunction symptoms are different for everyone. For babies and kids it is usually vomitting, crying, moodiness, fever and what they call sunset eyes. For adults it varies. Mine consist of constant pressure in my head and neck and sometimes seizures. I never get headaches when mine malfunctions. Hitting his head shouldn't cause it to malfunction. It however, has. A cold and shunt malfunction would be totally different. A cold probably would include a cough or runny nose. A urodynamics is when they fill the bladder up and measure the pressure. Pressure sores are very common in us. I have had only one in 25 years. Well technically 2, but they were both on my foot at the same time due to a cast that fell. Shift his weight is best. I don't think I stay in one spot in my chair for more then 10 minutes. The only thing I wear are jeans. I never had an issue with them. Hope I helped a little.

[LisaJoy]

There's a thread under "children" that is all about what to put on sore babies' bottoms! Including an interesting discussion about the merits of something called "Beaudreaux Butt Paste."

There's an overwhelming amount of information on the internet about many of the questions you ask. One good place to start is the Spina Bifida Association of America website, www.sbaa.org. On their home page is a link called "Fact Sheets." If you click on that, you'll find links to very straightforward fact sheets with information on hydrocephalus, chiari, tethered cord, and all kinds of other stuff.

[LisaJoy]

Oops, I forgot that you're in the UK. The SBAA site is helpful, but I'm sure ASBAH's website has good information too, and likely has links to specific resources available to you in the UK.

[dsmith]

As stated ealier children can present differently. My daughter had two malfunctions, one at three months of age and one at 15 months. Her signs were a slight decrease in function. I noticed that she was not moving her legs as much. Her forehead looked a little bigger. And, the main symptom was that her back incision area swelled and was sensitive to the touch.

She did not have the "normal" signs such as vomiting, change in personality, eyes going back in her head, etc.

She has had no adverse affects and is a very bright little girl at 2 1/2.

I hope this helps.

[cadon's mum]

Thanks for that information it really helps when you know what you should be looking for!
fingers crossed everything seems to be going o.k with his shunt so far.

[anna]

hello lorraine my name is anna i just signed up today i live in ireland. i got a little boy also has spina bifida his name is kyle he will be three in august his a little angel

[LisaJoy]

Welcome aboard, Anna! Post some pics of Kyle when you get a chance.

[valerie]

Hi All,

I live in Ireland & i have a 9 month old baby Boy Cian with SB. He wasnt diagnosed until birth which was a real shock to us. He is Gorgeous & very happy and content. He is L1/L2, he didnt have hydrocephulus until the repair was done on day 5. He had the shunt inserted at 7 months, i am looking for advice as to what i should be doing to help him along besides hospital visits, playing etc. He doesnt have any movement really in the legs.

[abbysmum]

Another one from Ireland here. Abby is 4wks old today & I'm one-handed right now so this is short! We got Orabase paste by Convatec in the hospital which is great for raw bottoms.