some news and some questions

[awomack2]

Hi I hope everybody is ready for the Holidays.. I am 23 weeks and we had another ultra sound today and they said that my baby has a large opening from the L2 to about L4 vert. I am not sure if a large opening is really that much to worry about. The fluid on his brain has increase but not to an alarming state and is consisitant with the brain & head growth which is in the normal range, so I guess that is good?. They do not expect my son to have bladder or bowl contol.. How is this handled exactly as he grows? He can move both legs and the is no obvious sign of club foot, the Dr. said that was a good sign as well . I guess at this point I am still worried & a bit confused...

[cadon's mum]

The large opening is a myelomeningocele the most severe form of spina bifida, don't panic!!! most of the people on this site have this. Your child will have an operation at birth to close this lesion and will be monitered for hydrocephalus. If the fluid on the brain increases then your child with have another op to place a shunt. Most babies are in the NICU for a couple of weeks. Bowel and Bladder incontinence are controlled by catheterisation and bowel management programs eg: enemas & laxatives etc.. and possibly surgery at a later stage. There is no reason to assume at this stage that your child will not walk. This will be determined after birth as they grow and develop. My son has myelomeningocele and is shunted he also does not have club feet although his feet pull up to his shins a little. He is now almost 11 months old and is doing everything any other little boy of his age should. We have been catheterising since birth which is a bit scary at first but it's now no big deal. It is really easy for me to say this now but please try not to worry too much your doctor has to tell you the worst case scenario and ultrasound alone can not tell exactly the level of your childs lesion you would need to have an MRI for that. And even then all babies are different and they will function at different levels than their lesions. It's not really about the size of the hole it's about how many nerves have been damaged inside it. Take some time to look through the threads there are lot's of new parents in your position and lot's of new babies that have just been born most questions are covered. There are also a few adults with spina bifida which have been an amazing support to me, who better to answer your questions as a parent than someone who is living with this condition.

[sean]

Worried and a bit confused, I guess is to be expected. I don't know what to do, take big calming breaths, go with the slow, be patient, one step at a time, no use worrying into the future that hasn't happened.
I'm 51 yrs, my SB is at L3-5 and S1-2, neurogenic bladder and bowel, tethered cord symptoms developed about ten years ago.
Neuro-bladder management depends on individual needs, we're all a bit different, and there are changes through life.
My first 7/8 years I wore an old fashioned (1960s) funnel, straps, big leg bag. no such thing anymore, yeah!. From 8 to 28 I had a urostomy, a hole/stoma in my belly and I wee'd into a bag, stuck on and belt. 28 to mid 30s I catheterised. Mid 30s to mid 40s, man pads/tena level 2. Mid 40s to now, urodome and leg bag, sticky roll on condom like urodome/ attatch a bag. It's very slick and stream line these days, it's getting better all the time. There are lots of options.
(hey Lifesgood, can't help it). awomack2 got to tell you, "life is good".

[Lifeisgood]

:D Hey, I am using a trademarked name, so use it all you want Sean!

Life IS Good! Welcome to the gang awomack2! I am 31 years old with SB Occulta. I was not diagnosed until the age of 9 and while I have some of the "typical" problems with SB (bladder issues and weakness and numbness in my legs), I am very happy with my life, am able to work full time and have lots of friends and hobbies to keep me happy and busy. One thing I have learned over the years is that while the doctors can shoot out numbers and hypotheses, those of us who have SB are definitely not a statistic. Right now the doctors are making their best educated guess about how your child may be impacted based on what they know from all of us as a group, but you really won't know how your child will be impacted until after he is born. And as you check out different posts on this site, you will read story after story about kids exceeding expectations and doing things that the doctors did not think were possible. Yes, there may be bumps in the road, but there are ways to drive around the bumps if you cannot climb directly over them. If you ever have any questions, feel free to ask me or anyone else!

Happy Holidays!

[awomack2]

Thank you for responding, I know that right now they are just throwing numbers at us & I also know that as a family we will push him to be all that he can no matter what his difficulites end up being. I just hear the worst from the doctors and it is good to hear some of your stories that REALLY give me hope for my son. I am just not very comfortable with the uncertianties of it all right now, but I also know that I worry too much =). I love him no matter what, he is our miracle baby! So again thank you! I am sure I will have more questions as he gets closer to entering our world!

[hope&faith]

I just wanted to say welcome, and congratulations on your baby. I know this is a scary and uncertain time. You'll have a lot of questions and its hard to hear everyone say "we'll see in time". Your baby can have very few issues with SB, or a lot of them. There's not a real way to predict. My sons lesion was very large, starting at L1 and going not sure how far down. They were quite negative about his potential. Partly because of growth issues in the womb though, separate from his diagnosis of SB. He had to be delivered with his twin very early and I can say he's had more compliications due to his prematurity than really his SB. And he's eight months/5 months adjusted age and has already impressed more than one negative physician. He's doing GREAT and is just such a joy in our life. I have to say that pregnancy and the "unknown" was the hardest part, as everyone says. Now that he's here, we just take things one day at a time and rely on the experiences and wisdom of everyone here to help guide us.
Take care!!!