Hi I'm new and VERY scared...the 3rd baby (21wks pregnant) diagnosed with SB

[XoBLoNDiE85]

HI my name is Laura. My daughter has been diagnosed with mylomengicelle and hydrocephelus(spelling?) and my husband and i are scared of the unknown basically. Because everything is pretty much up in the air until shes here I feel helpless. Will she talk....walk....have mental disabilities....etc? I'm 23 and scared to death. PLEASE if anyone knows anything or has so comforting words please feel free.

[angel]

Of course you are scared you have every right to be scared. The good news is that people with spina bifida lead perfectly "normal" lives. I am 31 i have Spina Bifida Myleo level L4/L5. I walk with crutches and use a wheelchair when i need to for chores around the house and for shopping and long distances. I am very happily married between us we have 2, 11 year old boys. My son has SB occulta but walks without aid and is doing very well. I own my own business and my husband is very successful in his career as well. I drive, before i got married (i have only been married 4 years) i owned my own home. I went to college. I have had a great life. There are others on here that have as well. I am sure they would be glad to tell you how wonderful their lives have been as well.
If you need anything i will be more than happy to help if i can.

Keep your chin up all will be fine!!

Angel

[lolathechecker]

hey, im in the same boat as you. my baby has spina bifida and hydrocephalus. im scared to death. shes due for c-section sometime in the next two weeks. but ive decided that everything will work out. im guessing you just found out? trust me, it gets easier. you go through this period where you are scared and feel so alone, but everytime your baby kicks or moves and the more info you find out from the doctor, you start to realize that this isnt really so bad. i cant promise you that everything will be ok, but i can tell you that almost every mother of a child with sb has told me "if i knew then what i know now, i would have never spent so much time worrying" so dont stress, things arent as dark as they may seem at times. it will get easier.

[XoBLoNDiE85]

Thanks for the reply...its nice to know that others ppl are going thru this same thing. I hope and pray everything turns out for you in these next few weeks...let me know how things are if you can. I know you'll be really busy. TTYL

[Spokie]

Hi Laura!

Take your time and read through all the old posts on this site. It's worth it: a goldmine of information, happenings, support and what-to-expects.

You'll find a lot of people going through the same (or who went through the same). Another thing you'll find here is hope and good news! Everything will be fine, and it's never as bad as it seems.

My son has massive SB with a T10 lesion. He is now 8 and a real ray of sunshine. I was also very scared and confused, but I took it one day at a time and believe me, the joy they bring to your life outweighs the stress and worries a hundred times over!

So don't feel scared because you are expecting an SB child - feel blessed!!!!

[swanson]

HI my name is Laura. My daughter has been diagnosed with mylomengicelle and hydrocephelus(spelling?) and my husband and i are scared of the unknown basically. Because everything is pretty much up in the air until shes here I feel helpless. Will she talk....walk....have mental disabilities....etc? I'm 23 and scared to death. PLEASE if anyone knows anything or has so comforting words please feel free.

Laura,
My wife and I went through the same thing and though the same thoughts. Our baby had a T-12 lesion is paralyzed from the waist down. He too has hydrocephelus and had a shunt put in. He is 7months old and is doing well. He has undergone 5 sugeries, we were in WVU Childrens Hospital from August 6-Sept 9. WE have a developmental and physical therpasit, and Easter Seals that come to our house weekly. It will be okay, you have to wait it out until she comes and see what the neurosurgeon gives as her prognosis on her mobility factor. Im sure your OBGYN will watch the swelling of the ventricles very closley in utero. My personal email is sswanson3293@yahoo.com, if you want to talk more in depth about what we are expereinceing and what is yet to come for you and your husband. Dont be scared, just remember your child has spina bifida, but it doesnt have them, you have to also remember that you are a parent of a special needs child, who in return have special parents. My wife and I have a 5 yr old son as well and so we were tottally blinded by what to expect in rasing a child with special needs.,

Scott

[Barb]

Scott---I would remove your email addy and PM it to her instead. That is the way that spambots pick it up and all of a sudden you are flooded with spam.

[naomi]

i am sitting here reading what tremendous support people are giving each other and i really do have tears in my eyes.
i found out 3 months back that my now 23 mth old is actually a sufferer of the occulta version. he has had a few tests and all seems ok, but they want to test him via and mri scan now as he has a tube that leads from his hole into his spine. everything else, spine, spinal cord, roots seem fine.
my boys is one of those children you cannot stop from moving, he loves to climb and cause lots of trouble, a typical boy some would say.
what is panicking me the most about him, is even though he is very mobile, he does stop to rest and asks me to rub his back for him. if he walks up the street, he tends to lose his legs from beneath him and constantly ends up sitting on the floor. only for a few minutes. i have seen him also start sticking his left leg out or starting to drag it a little.
my son comes aross as a very clumsey child, always covered in bruises, especially on his face. so much so that even people we dont know, but see on a regular basis at school, have gotten used to it and comments on it in a jokingly matter.
i have to say there is nothing as scarey in your life than not knowing what future or fate has in store for your child. Each day you try not to think about what is happening, what could happen, where it will all lead. but buried in the depths of your mind you can never forget.
my son is developing a love for football, and even at his young age he is getting quite good. just like his father.
i would hate for him to lose that, it just doesnt seem fair.
i dont like to usually talk about what could happen because it upsets me, but i cant help thinking in preparation what i will need to do for him.
my son is continueing through assessments at the moment, and has another appointment next week.
i would be lying if i didnt say, like many other parents, i wasnt scared to death. but it is a warm feeling knowing that people out there are ready and willing to help and advise.

[angel]

Naomi,

My son has occulta as well. So i know what you are going through. My son was rough and tumble as well when he was little. I didn't try to stop him i just let him go (within reason). He never hurt himself although he took some falls that would make anyone anxious. Now he is 11 years old and turning into SUCH a teenager. He isn't as rough as he used to be he has traded it in for video games mostly. He finally got strong enough to ride his bike last year which we were all very excited about. A couple of months after his spinal fusion (his neck was fused C1 and C2) he wanted to go skating so we went to the skating rink and he spent the first several visits on the floor!!! He finally got the hang of it and that helped a lot with his balance and his strength. We really think that is why he can ride his bike now. We took him to shriners last week and they were amaized at how much stronger he has gotten from the last time they saw him (3 months ago) now that the weather is warm he is on his bike again.
I was worried because he is now growing so fast that i am worried about his spine curving. I keep an eye on it at home but it is a very real possibility that he could develop scolosis very quickly. He has grown 3 inches in the past 3 months!!! So far so good his spine is still straight.

Angel

[naomi]

Naomi,

My son has occulta as well. So i know what you are going through. My son was rough and tumble as well when he was little. I didn't try to stop him i just let him go (within reason). He never hurt himself although he took some falls that would make anyone anxious. Now he is 11 years old and turning into SUCH a teenager. He isn't as rough as he used to be he has traded it in for video games mostly. He finally got strong enough to ride his bike last year which we were all very excited about. A couple of months after his spinal fusion (his neck was fused C1 and C2) he wanted to go skating so we went to the skating rink and he spent the first several visits on the floor!!! He finally got the hang of it and that helped a lot with his balance and his strength. We really think that is why he can ride his bike now. We took him to shriners last week and they were amaized at how much stronger he has gotten from the last time they saw him (3 months ago) now that the weather is warm he is on his bike again.
I was worried because he is now growing so fast that i am worried about his spine curving. I keep an eye on it at home but it is a very real possibility that he could develop scolosis very quickly. He has grown 3 inches in the past 3 months!!! So far so good his spine is still straight.

Angel
thankyou angel for that insight, it really helps to know that even though my son has problems, he may still get to do things that other children do in later life. even if it may take him a bit longer.
they are sending my son for an mri scan in london, because his sinus has a tube that is leading into his spine and has a small discharge every now and then. he recently got over a big infection in his sinus, which he has so much trouble with and our doctor couldnt say it was an infection or not because he didnt have a temperature. but eventually it exploded (in my face of all places). he made a quick recovery, but still gets alot of pain in his back.
he also has to see another doctor, cos though he is 2 now, he has began to take himself to the toilet for a wee, but when he goes all he can manage is a few drops at a time and we can be there for up to 15 minutes. he has no pain.
i am moving to a new house, at the moment we have 2 flights of stairs and this new one only has 1, not so may to fall down i suppose. the garden is a bit bigger than what we have at the moment.
i am still trying to get him to walk a bit more, anxious each time i do, watching every step he takes. i can tell you which muscle in his legs and feet move at what angle he takes lol. im sure i am becoming obsessed with it. just going up the street, a short street, he has to stop and rest, or his legs go again. i take his to the local park and field to let him run, just to try and build things up.
is there anything else i can do for him?
at such a young age i am at a puzzle, i know some garden swings and trampoline, seesaw etc may help. but i cant get them till we move now in august.

it is great news though about your son, obviously a very healthy and determined boy.
i didnt know that they could develop a curviture, but your son sounds like he is strong and that hopefully he may miss it.
i would like you to help me along the way, if you would please.

[Faithe]

Hi, i just turned 18 a month ago and have spina bifida occulta diastematomyelia. i have a support group on facebook @ http://www.facebook.com/group.php?gid=2215907655

[angel]

thankyou angel for that insight, it really helps to know that even though my son has problems, he may still get to do things that other children do in later life. even if it may take him a bit longer.
they are sending my son for an mri scan in london, because his sinus has a tube that is leading into his spine and has a small discharge every now and then. he recently got over a big infection in his sinus, which he has so much trouble with and our doctor couldnt say it was an infection or not because he didnt have a temperature. but eventually it exploded (in my face of all places). he made a quick recovery, but still gets alot of pain in his back.
he also has to see another doctor, cos though he is 2 now, he has began to take himself to the toilet for a wee, but when he goes all he can manage is a few drops at a time and we can be there for up to 15 minutes. he has no pain.
i am moving to a new house, at the moment we have 2 flights of stairs and this new one only has 1, not so may to fall down i suppose. the garden is a bit bigger than what we have at the moment.
i am still trying to get him to walk a bit more, anxious each time i do, watching every step he takes. i can tell you which muscle in his legs and feet move at what angle he takes lol. im sure i am becoming obsessed with it. just going up the street, a short street, he has to stop and rest, or his legs go again. i take his to the local park and field to let him run, just to try and build things up.
is there anything else i can do for him?
at such a young age i am at a puzzle, i know some garden swings and trampoline, seesaw etc may help. but i cant get them till we move now in august.

it is great news though about your son, obviously a very healthy and determined boy.
i didnt know that they could develop a curviture, but your son sounds like he is strong and that hopefully he may miss it.
i would like you to help me along the way, if you would please.

QUICK NOTE: I have no idea how the thumbs down symbol got on this post and i don't know how to take it off. Also i have no idea why there are two of them!!! Sorry


Naomi,

My son was two years old before he had any real symptoms as well. He had been getting yearly MRI scans just to keep an eye on everything and i am so glad we did. His bowels shut down right before he turned two years old ( the month he actually turned 2) He went for 30 days without a bowel movement. They had to put him under sedation to get it out and we went for our yearly scan and it showed that his spinal cord had stretched (he had a tethered cord) and needed to be released immediatly.

I think it is a good idea that you are taking him to a urologist. My son although you can't see his disability from the outside has the same bladder problems as the majority if not all of us with SB have. He is on meds to keep his bladder from getting infected and has been most of his life. His bowels directly affect how well his bladder preforms so we have to make sure both are working well and most of the time his bowels are not (that is our biggest struggle). By the way i was told my child would never be able to potty train. They were wrong!!!!

I am sure your child will adapt to the new house. I never looked at struggles as a bad thing. They are oppertunities to grow and learn how to adapt. We all have to learn how to adapt because if there is one thing i have learned that we can adapt to the world a lot faster than it is willing to adapt to us. I am sure he will do fine and will learn to manipulate those steps in no time.

I think it is good that you are getting him to exercise as well. I think it is very important to build what you have. Also no one can tell you a limit because no one knows his limits not even you. He will find his limits on his own. In my opnion it would be a good idea to push him to try to do anything and everything possible.

I don't let my son on a trampoline. That is a personal choice for a couple of reasons. There are so many kids who's bones aren't compromised that get horribly injured on those things all the time. My son having a bit of a disadvantage in the bone area doesn't need to push his luck there. Also his neurosurgeon told me when he was little that if i dared to let him on a trampoline and he got hurt i had better not bring him there. I guess that ment he would be quite pissed at me if i let him on one.

As for the running my son can't really run. I mean i walk with crutches and i can outrun him. He just doesn't have the muscle development in the back of his legs to go fast. What i do for his strength is i took him roller skating. That helped with his balance and his strength and now he rides his bicycle for strength exercise. Actually we discussed it today and he is going to start riding his bike to school and back home every day now that the weather is warm. It is a mile from our house to the school. He used to walk it before the weather got cold but his legs seem to get stronger from the bike more than the walking.

Anyone can develop a curvature. With or without sb. Case in point is my cousin when he 16 they discovered he had two 60 degree curves and a 90 degree curve in his spine and had to have rods put in his back to straighten it. He had nothing wrong with him prior to that. With my son they said it was more likely than someone without SBO that he would get a curvature. When he starts hitting his growth spurts they will start talking more to you about that i am sure.

I don't know how determined he is right now i am quite upset with him. His report card from school showed his grades dropped quite a bit this last period. Some say i push him to hard but i expect him to do as well as he can and when a child brings home grades that are good you expect him to keep it up. He totally dropped the ball this last period.

I push him a lot because i was pushed a lot and i see that it has helped make my life what it is today. My mother made me do everything my brother and sister did and held me to the exact same standards she did them.

I would be more than happy to help you in any way i can!!!!!!!

Angel

[angel]

thankyou angel for that insight, it really helps to know that even though my son has problems, he may still get to do things that other children do in later life. even if it may take him a bit longer.
they are sending my son for an mri scan in london, because his sinus has a tube that is leading into his spine and has a small discharge every now and then. he recently got over a big infection in his sinus, which he has so much trouble with and our doctor couldnt say it was an infection or not because he didnt have a temperature. but eventually it exploded (in my face of all places). he made a quick recovery, but still gets alot of pain in his back.
he also has to see another doctor, cos though he is 2 now, he has began to take himself to the toilet for a wee, but when he goes all he can manage is a few drops at a time and we can be there for up to 15 minutes. he has no pain.
i am moving to a new house, at the moment we have 2 flights of stairs and this new one only has 1, not so may to fall down i suppose. the garden is a bit bigger than what we have at the moment.
i am still trying to get him to walk a bit more, anxious each time i do, watching every step he takes. i can tell you which muscle in his legs and feet move at what angle he takes lol. im sure i am becoming obsessed with it. just going up the street, a short street, he has to stop and rest, or his legs go again. i take his to the local park and field to let him run, just to try and build things up.
is there anything else i can do for him?
at such a young age i am at a puzzle, i know some garden swings and trampoline, seesaw etc may help. but i cant get them till we move now in august.

it is great news though about your son, obviously a very healthy and determined boy.
i didnt know that they could develop a curviture, but your son sounds like he is strong and that hopefully he may miss it.
i would like you to help me along the way, if you would please.


Naomi,

My son was two years old before he had any real symptoms as well. He had been getting yearly MRI scans just to keep an eye on everything and i am so glad we did. His bowels shut down right before he turned two years old ( the month he actually turned 2) He went for 30 days without a bowel movement. They had to put him under sedation to get it out and we went for our yearly scan and it showed that his spinal cord had stretched (he had a tethered cord) and needed to be released immediatly.

I think it is a good idea that you are taking him to a urologist. My son although you can't see his disability from the outside has the same bladder problems as the majority if not all of us with SB have. He is on meds to keep his bladder from getting infected and has been most of his life. His bowels directly affect how well his bladder preforms so we have to make sure both are working well and most of the time his bowels are not (that is our biggest struggle). By the way i was told my child would never be able to potty train. They were wrong!!!!

I am sure your child will adapt to the new house. I never looked at struggles as a bad thing. They are oppertunities to grow and learn how to adapt. We all have to learn how to adapt because if there is one thing i have learned that we can adapt to the world a lot faster than it is willing to adapt to us. I am sure he will do fine and will learn to manipulate those steps in no time.

I think it is good that you are getting him to exercise as well. I think it is very important to build what you have. Also no one can tell you a limit because no one knows his limits not even you. He will find his limits on his own. In my opnion it would be a good idea to push him to try to do anything and everything possible.

I don't let my son on a trampoline. That is a personal choice for a couple of reasons. There are so many kids who's bones aren't compromised that get horribly injured on those things all the time. My son having a bit of a disadvantage in the bone area doesn't need to push his luck there. Also his neurosurgeon told me when he was little that if i dared to let him on a trampoline and he got hurt i had better not bring him there. I guess that ment he would be quite pissed at me if i let him on one.

As for the running my son can't really run. I mean i walk with crutches and i can outrun him. He just doesn't have the muscle development in the back of his legs to go fast. What i do for his strength is i took him roller skating. That helped with his balance and his strength and now he rides his bicycle for strength exercise. Actually we discussed it today and he is going to start riding his bike to school and back home every day now that the weather is warm. It is a mile from our house to the school. He used to walk it before the weather got cold but his legs seem to get stronger from the bike more than the walking.

Anyone can develop a curvature. With or without sb. Case in point is my cousin when he 16 they discovered he had two 60 degree curves and a 90 degree curve in his spine and had to have rods put in his back to straighten it. He had nothing wrong with him prior to that. With my son they said it was more likely than someone without SBO that he would get a curvature. When he starts hitting his growth spurts they will start talking more to you about that i am sure.

I don't know how determined he is right now i am quite upset with him. His report card from school showed his grades dropped quite a bit this last period. Some say i push him to hard but i expect him to do as well as he can and when a child brings home grades that are good you expect him to keep it up. He totally dropped the ball this last period.

I push him a lot because i was pushed a lot and i see that it has helped make my life what it is today. My mother made me do everything my brother and sister did and held me to the exact same standards she did them.

I would be more than happy to help you in any way i can!!!!!!!

Angel

I have no idea how that picture of the thumbs down got up on my post and i have no idea how to take it off!!!!!!!!!!!!

[Bigwilli]

Hi Blondi,

How are you and the baby? Me and my wife got the diagnosis about 2 months ago. I agree with the rest in here in that you are basically worried and scared to death at first then as you research this and make some friends here IT DOES GET BETTER! Many people I have met or stories I have read lead to some great stories of people moving on with happy lives for themeselves and their child so keep your head up. I'm open to any questions you may have...

[naomi]

my son had his operation nov 6th 2008, the mri scan showed that he had an open tract, leading into his spine, so he had the operation to remove that and some cartilage. while doing that they found an extra tethering so they also removed that. the operation was a success and he was allowed home after 5 days. since arriving home tho, he suffered with back ache (which could be due to the operation) and also suffers with his right leg, giving way or with pains. he seen a physio therapist who claimed that he was doing it for attention because he can do all their exercises with no problems, and showing no signs of symptoms that i suggested. I then told his doctor at the hospital where he had the operation, who says he cannot see any signs so the physio are probably right that it could be a muscular problem that he will grow out of. I felt that no-one was listening or they thought i was making it all up.
my son started nursery in september, one thing i am glad of though, is that his teachers have noticed that he is still having a problem with his right leg and that because they know he has had problems, they have to try and get him to slow down and do painting or drawing for a while, as my son will continue on his quest of being immortal lol and jumping and climbing, running and riding bikes. they have a wrote a letter to support my statements.
another thing as well, i have noticed though he is three and a half now, he still has a few problems with pedals, he can push with his left leg, but seems to struggle with his right, also on the electric cars he cannot seem to keep pressure on the peddle with his right foot.
I keep reading up on the ongoing symptoms of the occulta and fear i am just scaring myself half to death with it all, the doctor has agreed to do another mri scan but thinks he will find nothing and will sign him off, but if he does find something, i am afraid it will mean another operation and that scares me too.
my other son asked my three year old to take something up to his room the other day, but my three year old turned round and said, 'i cant my legs are poorly today',hw would of had to climb two floors to get there, i just wanted to cry.
I know im not the only parent who is going through this, and i know you are all hear to listen and to share with me, but sometimes i feel so alone and just want to cry. i feel really guilty to my son as well, cos he is so happy and just wants to carry on growing stronger and stronger as if nothing is happening, but when i see the aftermath of a day outing when he asks for medicine cos his legs are poorly, or a bath cos he is sore, thats when it takes all my strength not to keep apologising to him and stop myself from crying and asking him forgiveness.
i know i am sounding very dramatic, but i dont know what else to do.

[Bigwilli]

Hey there,

I thought I would share this. I have been coming here over the last year after we discovered our daughter had SB and feel confident in sharing that most kids turn out to be happy and healthy. Our child has sidestepped alot of the issues such as incontinence and probably will walk with bracing.

It's hard to pinpoint where any one particular child will fall as the diagnosis has a wide spectrum. All I can say is that I have not seen that many bad occurrances. I used to sweat "will she walk, will she have mental disabilities" and now I realize the worry was unnessary. Enjoy this special time in your life and keep yourself educated. This board is full of great stories and ancedotes so mark this site and read it often.

I also found that prayer and my faith in God helped alot. This is always such a personal thing to mention but I challenge people out there to look beyond themeselves.

It will be ok!

[sommers]

Ok here goes im 19 and i have spina bifida I am getting married in feb to a wonderful person his name is johnnie.. My ? is does anyone know if i can have a child havent been to a ob y=gyn yet but going to in dec.. My mom has always taken care of me and she is the greatest person i know.. But she tells me its un safe for me to have a baby so i wanted some unbiased opinions... Thanks ;)

[Summer25]

Ok here goes im 19 and i have spina bifida I am getting married in feb to a wonderful person his name is johnnie.. My ? is does anyone know if i can have a child havent been to a ob y=gyn yet but going to in dec.. My mom has always taken care of me and she is the greatest person i know.. But she tells me its un safe for me to have a baby so i wanted some unbiased opinions... Thanks ;)

You can. It can depend on your lesion level and how it affects you.

[Dodger67]

Your chance of having a child with SB is a bit higher than average. To reduce the odds you have to take a high dose of folic acid (4mg) daily for about 3 months before becoming pregnant and continue until the end of the first trimester. The same applies to all your childbearing age first through third degree relatives - in the case of male relatives it is of course their wives/girlfriends who take the folic acid.

[Emm]

Hallo Naomi, I so feel for you, noone likes to see there offspring suffering but do stop apologising to him - it's NOT your fault. My mum was constantly reminding me of how awful I must feel with this big scar on my back - and no doubt in her own mind reliving the stress it had caused her in my infancy - but it really used to annoy me at the time. I had blotted out any feeling of aches or pains for many years as is the normal way of things with most people. I fail to see how a little child would make up stories of being unable to do certain things especially as you say that as a rule he is so active! It's nice to know that you listen to him when he says he can't manage something because of the pain, it's such a lonely thing being in pain but he will learn to live with it.

Marissa Lee, just thought I would add that I had three children and nothing much was known of how to treat the problem in my day, but again it depends on how severe your situation is. All the best in your investigations and do hope things turn out well.

[Barb]

Laura, it is funny to read that old post now with how confident you have become :) :Banane21:

[XoBLoNDiE85]

haha i know huh...i was soooooo scared about EVERY LITTLE THING! I thought it was funny how this post is still getting activity haha

[Forda]

My friend's daughter was 15 when she found out that her son had spina bifida. My friend, the grandmother, has been a huge supporter of her and in part I know that is why they have all done so well. All I can tell you is that there will certainly be heart breaking times, for example, when Gabe (now 7) says things like, "Why did God make me this way?" Overall though, I can share with you that once your daughter comes into the world you will understand that she has a purpose in your life, and that God has a purpose for her life. Gabe is highly intelligent. I believe that I have heard that many myelo kids are this way. There are many challenges, but many celebrations as well. Recently they involved Gabe in hockey. They have slides and sticks with a pick for movement and the opposite end is like a regular stick. I am here because my friend doesn't use the computer at this level and I'm gathering information about bladder and bowel surgeries. This will be a good place for you and your husband (and your daughter when she gets older).

I pray that one day soon there will be a breakthrough in the cure for spinal cord injuries, but until then, try not to be scared, but have faith that God isn't going to give you anymore than you can handle, that He is there with you and that he loves you both and your children. You will all be fine, challenged in a new way, but fine.

[XoBLoNDiE85]

You are right...Hannah is now 16m and thriving!! thanks for the support