New, expecting twins (1 diagnosed with SB) & feeling helpless!!

[Miffy]

Hi,
I'm new, live in Australia and expecting fraternal twins (my first pregnancy). We were told at the 19 week scan last week that one of our twins has SB.
Like "mummyof2" on another thread we have also been told that he will be wheelchair bound with urinary/bowel incontinence and erectile dysfunction. We were also advised if I continue the pregnancy he will need possibly many surgeries. We are waiting to see a spinal specialist at the childrens hospital this week and i'm not sure at the moment what level the lesion is other than at the base of the spine (Sacral?).
The last week has been extremely emotional, we were given some information on termination (which was heartbreaking) and that they would not be able to do it for some weeks yet to reduce the risk to my other baby. We are so happy to have our healthy child but also feel really helpless - we of course want our son to have a good quality of life and the thought he may not have that is horrible, but then the alternative is gut-wrenching. I've read through the threads on here and most seem really positive taling about how doctors always give you worse case scenario & can make mistakes - i'm sorry to waffle and have also posted on another thread, but any other words of wisdom/advice would be appreciated. :kleenex:

[Miffy]

Oh forgot, we've not been told about any swelling on the brain - the banana shaped cerabellum is there, but no fluid - if anything we were told his head circumference is a fraction smaller that it should be for his age. We were also told it was an "open lesion" with no blister covering it.

Thank you....

[misty]

Hi Miffy!
I'm Misty, L5-S1 open SB. First, congratulations on your pregnancy! You've come to a really great place for info and support! A lot of the mothers here were given pretty much the same prognosis you've been given. I know my mom was. The OB docs are usually very negative about SB because number one, they have to tell you all the really bad possibilities so that if something bad happens you can't say "You didn't tell me all the risks!" Number two, they never see a SB baby outside the delivery room! You should try to get in touch with a pediatric neurosurgeon in your area for a more realistic viewpoint. As for walking or not, I can tell you that if his lesion is in the sacral region that's lower than mine and I walk (the lower the better when it comes to leg function). Others on this site don't walk, but still lead very happy, fullfilling, normal lives! We all struggle a bit with bowel and bladder issues, all to different degrees, but that's manageable! We have our ways! Your baby will be okay! Just stick with us and we'll be here the whole way!

[LysetteOlmeda]

Big hugs to you and your sweet babies on the way!!!! As you said you have browsed around the website and have read all the horrible things most of us have been told about our children, but I hope you have also taken a look at our beautiful happy kids! That was a major defining point in my pregnancy. When I found this website and saw the pictures, all I could see was happy faces :) I knew then that there was nothing we couldn't overcome together as a family. Sacral is very low and the spine, and the general rule is the lower the better. My daughter is some where around L-3 which is higher than sacral. Her head also always measured 2 weeks behind, but she had mild hydrocephalus. So it was kinda weird, because she had water on her brain but her head wasn't big. At 6 months old she has had only one surgery, the one to close her back. She is happy, loving and continues to thrive. She does have urinary and bowel issues too but we manage. If you have any questions don't hesitate to ask, and please fell free to check out our blog. It's in my signature.

[Dodger67]

Welcome! :happy065:

You will learn here that life with SB is not a disaster.
Yes we pee and poop different - some of us have to use catheters and enemas - some don't. Some of us use crutches to get around - some use wheelchairs - others manage without. Some have shunts - some don't.
The things we use are not objects of bondage, they are tools of freedom. I wish I could erase "wheelchair bound" from the language because it's a lie!

As others have already said, a sacral lesion usually means only minor paralysis - I'm going to stick my neck out and say the chances of your child needing a wheelchair are almost zero - and if he does - so what, you should see my cool new chair!

I'm Roger, 42yo, South African, uncle of five, father of none. I'm an IT nerd and wannabe high school teacher.
My SB Myelomeningocele lesion is at L3 (with L2 also partly affected), I don't have hydrocephalus and I'm a fulltime wheelchair user.

[ainemc]

Hi Miffy,
Everybody else has already given great advice and it is very true that you are always given the worst possible scenario that rarely ever pans out. This group is fantastic and is a true representation of people who have sb. My little girl is called Caitlin and has sb, and hydrocephalus. I was told she would be in a wheelchair when I was pregnant and have since been told by her orthopedic surgeon that she will walk and her level is higher than your little one.
She's just like any other baby, she's right on track developmentally and nobody would ever know she has sb unless i tell them. Pregnancy is the hardest part, it gets easier when your baby arrives :)
Congratulations on the twins, i used to look after twins and it's double the trouble but double the fun!
Welcome to the group :)

[cadon's mum]

Hi and welcome, my son has a sacral lesion , hydrocephalus (shunted). He is 19 mnths and is developmentally on target for a child of his age other than walking but we have been told that he is expected to walk without any assistance. Cadon is just a very normal and very happy little boy with a few additional needs. I was also given the same prognosis but was very lucky to have an OB that knew what he was talking about, he also said that it was very rarely the case with a diagnosis of SB being so low and that my son could have a very normal life . Pregnancy is by far the hardest part and the first year is a bit hectic but daily life for us now is pretty normal other than a few appointments here and there. My son is also both bladder/bowel incontinent but will be managed through surgery/catheterisation when he is a little older.... Twins how exciting i have twin brothers who are now 29 and they are still as close as ever.

[n3rdchik]

Welcome! and Congrats! Twin boys - I always wanted sweet little twin boys - lucky woman!

What Roger said.

[twinsis]

hi, i'm a fraternal twin and my twin has SB, if you have any questions please ask away :)

[LisaJoy]

Welcome! The others have said most of the important stuff. I'll just add a couple of things. First, many babies with open lesions have slightly smaller than "normal" heads because the cerebral spinal fluid is leaking out of the lesion. Whatever the head size is at this point is really nothing to worry about. His head size will develop normally after the lesion is closed, and if he develops hydrocephalus, they'll put in a shunt to control it.

Second -- In addition to reading on this site, read some of the moms blogs! Several of the moms have links to their blogs in their signatures.

This one -- http://www.ourdoubleblessings.blogspot.com/ -- is about twin boys, one of whom has sb (at a higher lesion level than your son's).

[excitedmom]

Congratulations on your pregnancy! Every parent here can tell you that having a child with spina bifida is more of a blessing than a disadvantage. I have a 6 month old baby girl, Zoey. I found out she had sb at 32 weeks pregnant. The doctors also gave me the worst case scenario- paralysis, incontinent bowel and blatter, hydrocphalus, chairi malformation, clubbed feet, and the list goes on and on. My daughters spinal column lesion is in the lower thoracic region. She doesn't move her legs and she does have to have intermittant catheterizations, she also has a shunt. BUT, she is still just as "normal" as my other two children. With her lesion being so high, I was given alot of negative information, but she was born just fine :) Pregnancy is by far the worse part, because it's all a wait and see. Every child with spina bifida is different, no matter where there spinal "defect" is. I hate using that word defect. But I promise you that baby will be a blessing like no other. Zoey has had 3 surgeries. One at birth to close her back. The second at a week old for her shunt. And the third was for a cyst that she had on her brain (which had nothing to do with spina bifida). She is already sitting up on her own, and when in her carseat or swing she will grab the sides and pull up so she can sit up. She is an angel. I wish you luck and hope you make the right decision. Welcome to our community :D

[Jill]

(pssst! This thread was started in September and she hasn't been back since)

[LisaJoy]

Fiddlesticks! I usually go back and check the beginning of a thread and didn't this time.

Oh well.

[jveprek]

He will have a good quality of life, he will have obstacles to overcome, but when he triumphs, you will all feel amazing!! I encourage you to check out many of our blogs and see what life is really like for our amazing kiddos!! (check in our signatures for links)

[Dodger67]

I always feel like we have somehow failed in our purpose if someone posts once and never returns.
I wonder if there is anything we can do about it? What makes some people come back and "stick" but others just pass through?

[Jill]

I'm guessing in a lot of these cases it doesn't matter what we say. The pressure to terminate plus the fear of the unknown mean they have no reason to come back.

[lovemykidos]

Hi, Miffy, congrats on the twins! I am a mother of fraternal twin girls as well, and after everything we went through in the beginning I now know doctors can be wrong. They checked for SB, told me both my girls were perfect, then when they were born we found out one of the girls had lipmeningocele, but honestly had they told me from the start she had SB, I would still made the decision to bring my beautiful baby in this world, she like the rest of my kids are my world and I wouldnt hav done it any different. So follow your heart and you will know what decision you need to make. Good Luck, twins are a handful, but I Love It!!

[jveprek]

I always feel like we have somehow failed in our purpose if someone posts once and never returns.
I wonder if there is anything we can do about it? What makes some people come back and "stick" but others just pass through?
Me too. I always want an update, but it makes me sad/worried when we don't get one.

[jveprek]

I'm guessing in a lot of these cases it doesn't matter what we say. The pressure to terminate plus the fear of the unknown mean they have no reason to come back.

That was my thought :(

[hope&faith]

:(
I hate thinking the worst but I know first hand how much pressure is put on expectant parents to reduce their pregnancy due to what the "experts" state are "quality of life issues." I'm not sure if it makes me more sad or angry at the so called "experts".

nope thats not true. angry in this case wins!
Holli