Myelomeningocele and hydrocephelus

[ShandiSF]

Hello, I am new to this and have some questions. I and my husband are 25, I am 18 weeks along and today we just found out that our second child has SB and hydrocephelus. Our first child is perfectly fine and we don't have any history in either family. I feel extremely deflated and anxious because I'm not sure what to expect. The doctor tells me that his is low on his back and that he'd be shocked if he could ever walk. I know they're not always right, but I was wondering a few things about each topic.
1. Does this affect him sexually?
2. What all is done about the bowel issue?
3. He has the most severe case of SB, Myelomeningocele, so will there be multiple surgeries?
4. How am I going to adjust our 2 1/2 year old to this?
5. Hydrocephelus, will he be mentally handicapped as well?
6. I read that the life expectancy is early adulthood, is that true?
7. How can I go back to work and leave him and how are we going to pay for all these bills?
8. How good can the quality of life be for someone suffering from both maladies?
9. How can they know all this from just a sonogram?

I think if he had one problem or the other I could face this and be strong, but right now I feel crumpled and feel so sorry for him, not even born and already has problems. I just don't know what to expect and I know each case is different, so it is hard to project, but I'd appreciate any info you guys can offer.

[LisaJoy]

The doctor tells me that his is low on his back and that he'd be shocked if he could ever walk.
Doctors are notoriously pessimistic, especially about spina bifida. There's no way to know yet whether he'll walk, but lots of MMC kids do. And if he doesn't, there are alternative modes of transport!

1. Does this affect him sexually? It depends; some of the guys can answer better than me!
2. What all is done about the bowel issue? This is a regular topic of conversation on this site; check out some of the posts under children. This, too, will vary a lot from case to case.
3. He has the most severe case of SB, Myelomeningocele, so will there be multiple surgeries? Probably, but this has come a long ways in recent years.
4. How am I going to adjust our 2 1/2 year old to this? Kids that age are remarkably adaptable. Remember, he'll take his cues from you.
5. Hydrocephelus, will he be mentally handicapped as well? Most are not. It is a common myth, even among medical folks, that mmc w/hydro always means mental disability. Back in the 60s that was often the case, but shunting technologies are quite sophisticated now. No one can say for sure, but as long as the hydro is carefully managed, he should be fine. Lots of folks w/mmc & hydro have learning disabilities like dyslexia, but those are so much more widely diagnosed in the general population these days that I don't know if it has anything to do with the hydro.
6. I read that the life expectancy is early adulthood, is that true?Life expectancy is normal as long as the hydrocephalus and any bladder/kidney problems are carefully managed. There are several of us on this forum that are, ahem, past early adulthood.
7. How can I go back to work and leave him and how are we going to pay for all these bills? Are you in the US? If so, and if you don't have employer or private health insurance, your child should be covered under the SCHIP program or under a separate program for disabled children - it used to be called Crippled Children's Service, but they changed the name. Contact your state Dept of Health or a social worker at the hospital where you will give birth. If there is a Shriner's Hospital or Scottish Rite Hospital near you, they provide free medical care for disabled children. As far as going back to work, some of the moms can share with you about that.
8. How good can the quality of life be for someone suffering from both maladies? Lots of people with both conditions have great quality of life, just like some perfectly healthy people have lousy quality of life. I've read several Q of L studies on teens with mmc/hydro and they generally have the same perception of their q of l as their non-disabled peers. The key is in the parenting and in maximizing opportunities for education, socialization, etc.
9. How can they know all this from just a sonogram? I have no idea! It is important to realize that they cannot tell for sure from a sonogram what the degree of neural involvement is.

I don't want to minimize the challenges and I know it seems overwhelming now. And it is true that, even today, there can be pretty poor outcomes. But the worst case scenarios usually don't happen - most people cope just fine and you can too. You should check to see if there's a local chapter of the Spina Bifida Association of America near you (www.sbaa.org). If you are in the UK, I think the organization is ASBAH. Sorry to be so long-winded -- I'm sure you'll get lots more feedback over the weekend. -- Lisa

[LisaJoy]

For Shriners hospitals go to www.shrinershq.org/Hospitals/Main -- there is a drop-down box on the right that gives all the locations.

There are only 2 Scottish Rite hospitals (they work just like Shriners), one in Atlanta and the other in Dallas (I went to the one in Dallas as a kid).

[angel]

Hi ShandiSF,

I want to remind you of the number one thing that is true of all of us with SB we are all very very different. Remember that there is no set answer for anything. Many of us with the same level of SB have different parts affected (some are paralyzed from the waist down some of us are not. I am only paralyzed from the ankles down)

I will try to tell you what I know about some of your questions.

1. Does this affect him sexually? Possibly but what I learned at the national SB conference in the sexuality discussion was that even if it does the drugs they have today really help in that area. By the time your child is even old enough to think about it they will probably have better ways then they do now of fixing any of those problems.
2. What all is done about the bowel issue? Depends on the issues you have. Some have severe constipation (my son who has SB Occulta) has a very extreme case! We handle it though and it is just something we deal with. There are several meds and several procedures that can deal with whatever issues he may have in that area.
3. He has the most severe case of SB, Myleomeningocele, so will there be multiple surgeries? That varies as well. Some people have had more surgeries than they can count. I have Myleo to at level L4/L5. The only surgeries I have ever had was the closure of the spine at 6 days old. Club foot repair on one foot at 6 years old. A spinal fusion at 8 years old and a c section when I had my son when I was 19. I don't have a shunt so I have never had to deal with that part.
4.How am I going to adjust our 21/2 year old to this? Kids are awesome. I had an older brother and sister. I was no different to them and they fell into their rolls as big brother and big sister without much of a problem if any problem.
5. Hydrocephelus, will he be mentally handicapped as well? No one can answer this for sure until he gets here. Maybe not even until later. I know many many people with hydro who are college graduates, very intelligent, very successful people. Not saying you have to be a college graduate to be successful. When I say very successful people I mean they persevere with hydro.
6. I read that the life expectancy is early adulthood, is that true? No of course none of us know how long we are gonna live that is just the human condition in and of itself. As far as SB goes I know several people who are senior citizens who have it and are still going just as strong as ever!
7. How can I go back to work and leave him and how are we going to pay for all these bills? Do you have health insurance? I am sure your insurance will pick at least some of it up and if you qualify I would check into Medicaid. My mom had insurance when I was born (she and dad were divorced shortly after my arrival. it wasn't because i had SB they were on their way out before i got here.) and her insurance picked up some things then she went to get Medicaid and it took care of the rest. At least something to look into.
8. How good can the quality of life be for someone suffering from both maladies? This one is gonna be long lol. First thing we aren't suffering. I don't mean that to offend you as I know this is all knew to you. One thing I have learned in my life is that it really isn't that bad. I also believe attitude is EVERYTHING!! You can't compare his life to yours. A lot of parents have this vision of how they would feel if they were in the shoes of their child. This is a bad idea and I will explain why. First of all you can't compare because you know what it is like to not have a disability. Your child will NEVER have that knowledge so comparing is useless the two realities are not the same. When you are born with something it is all you know. For example people always say to me "It must be so hard to walk with your crutches" Actually it isn't hard at all. I learned to walk with a walker when I was less than 2 years old then went to crutches when I was 3 years old. I learned it at the same time other kids learn how to walk. Like a duck to water I swear it almost came naturally instead of walking on my two legs I needed something in my hands to hold me up. That is it. If I had been in a chair I would have just learned to use the chair. My quality of life is OUTSTANDING!!! I have everything I ever wanted. I have a husband who is wonderful and who loves me (in case you are wondering he is not disabled) He is extrodinarily successful in his career. I have my own business (not an at home business) and enjoy it very much and it is doing well. Before I got married I worked, lived on my own, raised my son on my own (until he was 8 years old then I got married) I have a wonderful son who is 12 years old. He has SB Occulta but that is a whole other post. He is doing great. In the 6th grade and doing very well. I have a wonderful stepson. I have a beautiful home. I had friends in school, got invited to parties, had boyfriends the whole 9 yards. I have never ever seen where anyone's life has been better than mine. The SB is just a detail. To me it is a small detail as I refuse to give it anymore space in my life than I have to. Quality of life is easy you just have to remember to treat him like you would your other child and encourage him to go after everything life has to offer. It won't fall in his lap!
9. How can they know all this from a sonogram? They don't. That is the simple truth of it. They give you worst case scenario because they have to.

Now I am going to give you the most important piece of advice I can offer you. I know from experience in my own life. I am 31 years old. Treat that child like you would if he didn't have a disability. Expect him to do things for himself. Expect him to struggle in life. It is hard to watch him do but it is good for him to be as independent as possible at the same age you would your other child. Of course you have to take his physical needs into concideration what ever they may be but you don't want to coddle him. You defiantly don't want to feel sorry for him!!!! You want him to grow up seeing life as a good thing and just because SB happens to be a detail in his life it is NOT who he is and absolutly does not predict the outcome of his future!!!
The reason I say this is because I am a facilitator for a support group for parents who's children have SB. I have been there and done it and I find that a large majority of the parents I meet feel sorry and want to protect them from everything. This doesn't help they need to go through life as much like everyone else as absolutely possible. You have to look at the big picture. I am sure you would want for him what you want for your other child. To grow up and be able to live his own life, and go for all the things he would want to shoot for. Make sure you let him know everything is possible for him just like everyone else. He may not be a football player but there are so many things this world has to offer he will find his way around and find something he will want to do with his life! We all have dreams we just have to do everything in our power to make it happen! That is true for all of us with or without a disability!
My mother made the difference in my life! A lot of people thought she was mean because she made me clean my room and I had all the responsibilities and rules and expectations she had for my brother and sister. She would help me if I absolutely couldn't do something (which is very very rare) other than that I had to do for myself. She always knew I could have whatever I wanted and never let me think differently even when life wasn't going my way. You know what she was right!!! She is the reason I am able to do all that I do today. She never let me get bogged down in all the crap life offers you have to move forward. You have to keep your chin up and move forward and if something gets in your way MOVE IT OUT OF THE WAY. She did such a good job and the fact that she raised 3 kids (me being the youngest) alone and she turned all of us into strong people who never give up. You can do the same for your son and that is the BEST thing you could ever do for him!!!

If you have anything else you want to ask please do we are all happy to talk to you and answer anything you have a question about.

Angel

[Dodger67]

Angel's post should be compulsory reading for all parents!
I couldn't have said it better.
Angel you are AWESOME!!!:sign0021:

My replies and comments to the OP:

1. Does this affect him sexually?
Yes - but don't worry about it, he'll figure it out when he gets there. Hell will freeze over before I'll tell my mother how my girlfriend and I do it!!! Thats Icky!

2. What all is done about the bowel issue?
See the threads about it.

3. He has the most severe case of SB, myelomeningocele, so will there be multiple surgeries?
Probably - I had 40+.

4. How am I going to adjust our 2 1/2 year old to this?
You don't - kids do their own "adjusting". I'm the 3rd of 4 kids.

5. Hydrocephalus, will he be mentally handicapped as well?
It is possible but unlikely, it only happens in really severe cases. See other threads on the topic. (BTW I'm very sceptical of a diagnosis of HC so early in your pregnancy.)

6. I read that the life expectancy is early adulthood, is that true?
Maybe 50 years ago - not anymore. My 41st birthday is on the 24th and I am, as my dad always says, "disgustingly healthy".

7. How can I go back to work and leave him and how are we going to pay for all these bills?
That depends on where you live and the rules of your current medical insurance, Social Services, etc. - others have answered for the US and UK.

8. How good can the quality of life be for someone suffering from both maladies.
Life is good! See Angel's reply.

9. How can they know all this from just a sonogram?
They don't - all doctors are miserable pessimists. Nobody ever sues if things turn out better than predicted. Maybe its the lawyers that are miserable?

[Summer25]

Hello, I am new to this and have some questions. I and my husband are 25, I am 18 weeks along and today we just found out that our second child has SB and hydrocephelus. Our first child is perfectly fine and we don't have any history in either family. I feel extremely deflated and anxious because I'm not sure what to expect. The doctor tells me that his is low on his back and that he'd be shocked if he could ever walk. I know they're not always right, but I was wondering a few things about each topic.
1. Does this affect him sexually?
2. What all is done about the bowel issue?
3. He has the most severe case of SB, Myelomeningocele, so will there be multiple surgeries?
4. How am I going to adjust our 2 1/2 year old to this?
5. Hydrocephelus, will he be mentally handicapped as well?
6. I read that the life expectancy is early adulthood, is that true?
7. How can I go back to work and leave him and how are we going to pay for all these bills?
8. How good can the quality of life be for someone suffering from both maladies?
9. How can they know all this from just a sonogram?

I think if he had one problem or the other I could face this and be strong, but right now I feel crumpled and feel so sorry for him, not even born and already has problems. I just don't know what to expect and I know each case is different, so it is hard to project, but I'd appreciate any info you guys can offer.

1. It may or may not. Everyone with SB is different.
2. Again everyone is different. Some use medications. Some like myself had to resort to surgery.
3. More then likely. I am 25 and have had close to 50 surgeries so far. Some not having to do with the SB.
4. I am not a mother, so I would not know.
5. Not necessarily. I graduated high school. I have an A.A. Degree and going back to college next semester for an A.S. in Health Management.
6. Absolutely not. I know several people in their 60s and 70s with SB.
7. You can get SSI and Medicaid for him if you qualify.
8. I am guessing you mean the SB and Hydrocephalus? I am 25 and have done everything a normal person does. I drive. Go to school. Have a job. Have awesome friends. A disability isn't always that bad. He will never know what it is like to be "normal." So, he won't miss it that much. As he gets older put him in everything you can. Preschool, sports, any after school activity. I played tennis, wheelchair basketball, swam. I also was the National Ambassador for Shriners Hospital. Was the local Easter Seals posterchild for 2 years straight. I also was a posterchild for the March Of Dimes. So, I was kept very busy as a child...lol. I absolutely loved it though! I miss every bit of it.
9. Well you are lucky. They can see the open back most likely. Or the messed up spine. When I was born they couldn't even tell that. My mom never even knew until I was out.

With the lesion low on the back that is usually a good thing. Not sure why the dr is saying that he probably won't walk yet the lesion is low. The lower the better usually. I had a high lesion and got my first wheelchair at 5. Now a days they can put a 1-2 year old in one. SB isn't the end of the world.

[Big John]

I was "lurking" around trying to find some info. My grand daughter has SB and I am trying to get as much info as I can to help my daughter and son in law. From what I've read in this thread alone I see that things will turn out OK. Thanks everybody. Once I figure out what questions to ask, I will be sure to do so. Thanks.

[dahliafaolan]

1. Does this affect him sexually? That'll vary from case to case. I've known guys that were completely capable and others that couldn't maintain an erection. You won't really know until he gets to the proper age and unless you have a VERY open relationship, I don't think you'll ever really know about it.
2. What all is done about the bowel issue?A number of things can be done for the bowel issues. Some have no difficulties with bowel control. Some never quite manage it. I myself had issues with it all my life. We did enemas every other day until I was about 10. Then my mom pretty much gave up on that and tried controlling my accident issues with diet (high fiber foods can be your friend) as well as laxatives and stool softeners. Then when I was 18, the doctors performed a cecostomy with a chait tube which enables me to do bowel washouts. It's sort of like an enema, but instead of the water going up the rectum, it goes into a tube which is connected to my colon. The water goes through the plumbing and comes out the proper end if you get my meaning. Then once I'm done, I remove the tube and close the button (I will have to send a picture of that one day. Guys, please remind me. Mine is a little different so I'm still teaching the nurses and doctors in my area about my case.) On a good stretch, I can go about a week without accidents. I can never be accident free. I think the longest I went without an accident was two weeks, but that was still a great feat for me.
3. He has the most severe case of SB, Myelomeningocele, so will there be multiple surgeries?More than likely, yes. But just because he has the most severe case doesn't mean he will need a lot of surgeries. I am currently 23 and I have only had 16 or 17 surgeries. And about five of those were because of a doctor's mistake, not due to my spina bifida itself. And I'll be honest, for the most part, the surgeries were harder on my parents than they were for myself. I don't even remember most of them. The ones I do remember are no more than a blip on the radar of my life. I only really remember them when someone brings them up.
4. How am I going to adjust our 2 1/2 year old to this? Small children are extremely easy to adapt to any situation. So long as you don't treat your new child any differently than you do your 2 year old, your 2 year old won't realize there is anything different about your new baby. I myself have a 2 year old godson. I have been there for him from day one (I even got to be in the delivery room when he was born.) and he doesn't see me as any different than any of the other adults in his life. He's even gotten to the point that when he wants attention, he'll climb into my wheelchair from the footrests up and ask me for a ride.
5. Hydrocephelus, will he be mentally handicapped as well? Some hydrocephalus patients can have learning disabilities, it's true, but from what I've seen, the learning disabilities are mostly minimal. But hydrocephalus is like Spina Bifida, it varies from case to case.
6. I read that the life expectancy is early adulthood, is that true? Spina Bifida kids, if well cared for, have pretty much the same life expectancy as any one else. My mother's obstetrician told my mother that I wouldn't live past the age of 10, but I'm now 23 and in the peak of my health. Usually once you get them to adulthood, their health really stabilizes and if they take care of themselves, they can live a long time.
7. How can I go back to work and leave him and how are we going to pay for all these bills? I'm not really sure how you can pay for the bills since I don't know your situation, but I can give some advice for taking care of him. One option you can look into is personal care attendant services. It's basically sort of like a babysitter service that can deal with your child's medical issues so that you can go back to work. Also in the first few months, you might qualify for home health services. You'll have to see what's available in your area.
8. How good can the quality of life be for someone suffering from both maladies? In a phrase, very good. I have a number of friends that were born with both conditions. I myself was only born with myelomeningocele, but I am a college graduate. My friends graduated high school and one is currently in college. Out of the four of us, three of us have held full time jobs for a while. All four of us have had relationships of our own. Two of us were either engaged or close to it. All four of us either have our driver's licenses or are in driver's ed. Life is what you make of it.
9. How can they know all this from just a sonogram? I'm not really sure with the hydrocephalus, but the meningocele they can see in the sonogram. It's actually very visible in the scan. Usually can see the deformity in the bone, either as a hole in the bones or in my case, the spinal cord can come out of the bone.

[ZoesMom]

I will answer what I can saying as to Zoe is only 6 months old.

3. Zoe will be 6 months old in 3 days and she has had 4 surgeries. One being for her club foot. Another one was her back closure then she had her shunt and she has had to have one revision but it was because they needed to seal up around where her shunt goes through her skull because it was leaking.
4. Our then 2 1/2 year old has adjusted VERY well. Better than I could have ever expected. She adjustewd to the daily routine of going to see sissy in the hospital until she came home. Also to going with us to all her doctors appointments. Now that Zoe is going on 6 months Our going on 3 yr old knows that sissy has big owies and she gives here sisster lots of kisses and helps mommy take care of Zoe.
7. We have state medicaide for Zoe. It has paid 100% of everything up to this point. I have only seen how much 3 of her 4 surgeries have costed and just those two statements were $100,000. If you meet the income requi. I would seriously check it out.
9. On ALL of Zoes ultrasounds even I saw everything quiet clearly. On her spine, where her lession was, you could see this black "bubble" where the bone shouldve been. And black on an ultrasound means fluid and white means bone. Her head also had the "lemon shape" to it that was an indicator of the spine being pulled down. On her hydro you could see two black "circles" where the fluid was building. Each ultrasound they got bigger. By week 37 the two spots were huge and it really scared me thinking all that was pushing on her brain. But my wonderful docs told me that in the womb the skull is very flexible and allows for all the extra fluid but its when they are born that it becomes an issue.

[Gymp]

Nothing really more to add as it's all been said in the above posts.I was born with Spina Bifida and am now 52 years of age.Life has many ups and downs regardless of SB,life's been good for me thus far! Having a positive attitude will also reflect on how your child sees the world and adapts to it.

Gymp

[nanna]

well said Angel.
Changing the subject slightly do you know of any good childrens books specially for SB or do you think they are un necessary

[Theresa]

nothing more to say - but as a mom of a 2 yo with SB, she is so much more than that diagnosis. it was so scary, and it's a journey, but find a specialist now and learn as much as you can. I wonder about the sex thing too, but I agree with Dodger - I'm on a "need to know" basis when she becomes of age! I didn't know until she was born, and I wonder sometimes if that's a blessing, so I wasn't worried throughout the pregnancy. I'll send some positive energy/prayers/whatever you what to call it/ your way.

[angel]

well said Angel.
Changing the subject slightly do you know of any good childrens books specially for SB or do you think they are un necessary

Honestly stuff like that always made me feel wierd. I think just regular books would be perfect. Remember the key is to point out the similiarity not the difference! Always point out that they are no different than the other kids. Not walking and all the other issues don't mean a hill of beans in who they are as people.
I hated the stuff that pointed out differences not that i was ashamed of my SB but it just seemed to put an unecessary spotlight on them. I never felt any different and (espically at home) was never treated any different. At school it was the same for the most part. I was just another kid in class the ONLY special thing i got was i could use the bathroom when i needed to. In the 5th grade they wanted me to leave class early ( i went to a new school for 3 months when my mom remarried) to beat the crowd and get my books (the schools bright idea not mine i personally had no problem fighting my way through the crowd) but that was short lived.
My personal advice just raise your child like you would any other because they are the same.
I hope that made some sense
Angel

[nanna]

Thanks Angel for your advice and taking the time to reply, i will take note of what you said. My aim was never to try and make our beautiful boy feel different, in fact i am all for him fitting in with everyone else and getting on with life. The only thing that was running around in my mind was could a childrens book help a child to feel less different if in deed they do feel this way. I certainly do not want him to feel weird or different by pointing out where he may be.
I have lots to learn and thanks to you and others i/we will gradually get there although i realise it will be a long haul.

[Dodger67]

I fully agree with Angel (If this goes on much longer people are going to confuse the two of us! LOL!).

There is a total difference between a congenital disability and a traumatic disability.
People born with a disability have not lost anything. There is no frame of reference to compare oneself to TABs (temporarily able bodies).
Someone who becomes disabled due to accident or disease has a shedload of issues to deal with that simply do not exist for us.
Practically all medical and paramedical people approach disabilities from a rehahilitation point of view - for us it is a meaningless concept. We don't have to adjust to our condition any more than a "normal" baby has to adjust to being able to walk etc. It just is what it is.
The people who do need to adjust are firstly our parents and the rest of the family. (We should actually compile a reading list for them!)
I think that is the essence of what particularly Angel and I bring to this forum throughout just about all our posts - with a lot of help from others here too of course.
Angel's eloquence meshes well with my often forceful expression of my point of view.

[Gymp]

There is a total difference between a congenital disability and a traumatic disability.
People born with a disability have not lost anything. There is no frame of reference to compare oneself to TABs (temporarily able bodies).
Someone who becomes disabled due to accident or disease has a shedload of issues to deal with that simply do not exist for us.

Very,very true Dodger,I deal with this every day.My wife was in an automobile accident in 1992 and was left paralyzed on the left side.She'd get really depressed when her rehabilitation with therapists wasn't going as smoothly as she thought it would and she'd throw tantrums (understandably so).I was/am entirely different,rather than getting angry I'd just figure out another way,often surprising therapists.

This very issue has caused minor problems between us where there would be a task that she'd have difficulty with she's just sit and wait for instruction or help,where I would have not bothered to wait and tried and tried until I figured it out.I may have not done it the proper way but I would have gotten it done.I have to learn to be a bit more patient as I've been doing workarounds since birth whereas she's only been at it since age 27.

I also totally agree with Angel! I too wasn't treated any different from my other siblings,I had my chores to do and if I didn't do them by gosh there'd be hell to pay.I was unfortunate to be the only son out of the four kids lol so my chores were all the yard work,mowing the lawn,
edging,digging the garden,shovelling snow,etc.I'm truly thankful I was treated no different than an abler bodied child,It's taught me that nothing is unattainable.If I want something and work hard enough at it...I'll get it no ands ifs or buts.

I still remember at age 14 or so being at a hardware store with my dad and seeing a bike that I wanted.I asked the old man Hey Dad I really like that bike can I have it? His reply to me was sure you can have that bike or that one or that one pointing to the other bikes with his finger,you can have any bike you want,all you gotta do is get a job,earn the money and it'll be yours.I sighed and left the store a little bummed.That summer I joined the farm labour pool and got a job picking fruit and by the end of that summer I had that bike.Boy did I take care of that thing as it was my money that I slaved for that bought it!

Sorry for getting a tad off topic and long winded but it's still sorta the same thing,kids with SB are just kids and shouldn't be treated any different,when they grow up they'll thank you for it,as I've already thanked mine.

Gymp