Another new mother expecting

[CMC]

Hi all,

I am 20 weeks pregnant and my baby has been diagnosed with spina bifida. The doctors have said the lesion is between L4/L5 and the sacral area. They saw the "banana sign" in the baby's brain, but at 19 weeks, there was no swelling yet. The doctors have been encouraging especially compared to experiences that I have read on here. The pediatric neurosurgeon told us that based on the "crude" information from the ultrasound that this child could possibly walk independently, but we have to "wait and see". That phrase is so completely frustrating!

I have been reading nonstop about SB for 2 weeks now and I'm so thankful to have found this forum. It has answered many of my questions, but I do have a few specific ones that I'm hoping some of you can answer for me:

1) The neurosurgeon told us that this child would probably have many surgeries in her lifetime including tethered cord, bladder, orthopedic, etc. Can someone tell me what is the average number of surgeries, if there is an avg.?
2) The neurosurgeon said bladder function is all over the ballpark. Do most people with SB wear some type of protective undergarment and cath for most of their lives?
3) From what I have read about shunts, which the doctors told me this child would most likely have, it seems like if there's several problems early on with revisions, that this could continue on for some time. Do you think that's accurate?
4) I will be able to be with this child as a stay-at-home mother until she is about 5 months old. Next January, I would have to go back to work, especially to maintain our family's insurance. My husband and I also have a 2 year old (She will be 3 in Dec.) that we have alternated days of caring for. I usually work MWF and he works TTH. What do most mothers do on here?

Thank you for your time and input!

[leigh828]

Hi and welcome to the group! I have a 13 month old son with SB and he is doing great. :) I'll do my best to answer your questions...here goes...

1. My son is 13 months and has had 2 surgeries (his closure surgery and shunt placement)

2. Our urologist has made it clear that he believe that Grey will be in "big boy pants" just like his friends, and will be cathing for continence.

3.I'm not really sure about the shunt issues...Grey had his placed at 3 weeks and we haven't had any issues with it. Our neurosurgeon did tell us that 50% of kids do need a revision in the first year 60% will need one by the second year.

4. I am also a SAHM, but I know of others whose kids go to "regular" daycare. They either go to the daycare to cath (if cathing is needed) or they have taught the daycare workers to do it. Not all kids with SB need to be cathed right away.

Congratulations on your new baby! You have come to the right place to find some answers. Pregnancy really is the hardest part of all of this. The "wait and see" is just so hard. Don't get me wrong, even at 13 months we still have A LOT of the "wait and see" but he is here, and so much fun to wait with!! :)

[jellolegs23]

Hi,

Welcome to the group! :happy065:

My name is Kelly, I am a 28 year old female with Myelomeningocele Spina bifida at the L4-L5 level and shunted Hydrocephalus.

I am answering your questions based on my personal experience and everyone's experience with the disability is different even when they are at the same level. This is just to give you an idea of what to expect.

1. I have had about 17 surgeries in my lifetime, most of them orthopedic to help me with my clubbed foot and hips, I had one back surgery (the back closure), one eye surgery as the hydro affected my eyes a little bit (not a huge surgery), I had one shunt placement and one revision in my lifetime, I have had one surgery on my bladder to help with continence problems. I do not know the average amount of surgeries as the amount will be different for each individual. I am able to walk but it is difficult to walk long distances, so for long distances I use a wheelchair. Using a wheelchair doesn't seem to be much of an issue, its just another form of transportation.

2. Some of us wear regular underwear and some of us still wear protective garments into adulthood as urinary continence can be achieved (the results will be different for each person) but bowel management seems to be a bit harder to achieve. There are options out there for both bowel/bladder management it is a matter of what works best for each individual. I still wear protective underwear for bowel problems but bladder continence has been achieved. I was late in starting my bowel/bladder management as I needed surgery for my bladder and there wasn't a lot of surgical options to choose from when I was a child. I am currently trying to use the cone enema for bowel management and it seems to be working quite well so far I just need to get it into my routine. There are many surgical options to choose from now and they are all excellent options. Some may only need medicine and cath and some may benefit from surgical options while cathing.

3. I have shunted Hydrocephalus and I have had one shunt placement and one revision in my lifetime. Some will need more than that and others don't need a lot of attention in that area. No one knows exactly why some people need many shunt revisions and others don't seem to have a big problem.

4. I am not a mother so I am not going to be much help with this question but I know my mother stayed at home with my older sister (two years apart in age) and I until we were about in elementary school and then she went back to work full-time for the school district. My dad was an apprentice so he was on the road quite often for his job until I was at least 6 years old. She found baby-sitters and help from the neighbors until I was old enough to go into Early Childhood, a program for kids with disabilities to try to catch up with their peers so they can be ready for kindergarten. Each family who has a special needs child will look differently as we all have to do different things to be able to keep our family in good health while still being able to pay the bills and keep health insurance.

I hope I was able to give you some perspective on what you can expect as it is hard to predict what to expect in a situation like this before your child is born. However, I do commend you for seeking out as much information as you can before a situation occurs. Seeking information is the key to success and asking for help when you need it.

If you have any other questions please don't hesitate to ask.

[cadon's mum]

Hi, i also have a 13 month old son with SB and hydro (shunted) ACII malformation. He is doing great and continues to amaze me every single day. I'll have a go at answering your questions too..

1. My son has had 4 surgeries. Myelo closure, insertion of VP shunt and two revisions.
2. He is incontinent with both bowel and bladder but his urologist is confident that with surgery he can achieve social continence.
3. Cadon was in the 50% that needed a revision, he had two revisions over two days because of complications, that was last june and touch wood he's been fine ever since.
4. I am also a SAHM because of all of the appointments he has had in the first year, i also have 3 other children to take care of but would love to study midwifery just as soon as we have all of cadon's care sorted.

[jellolegs23]

Sorry, I reread my post and realized it was all over the place. I hope my post is easily readable. If it is not, please don't hesitate to ask for clarification. :)

[LisaJoy]

Welcome from another Tennessean, CMC!

I'm not a mom, and I have just about every form of sb EXCEPT myelomeningocele (no hydrocephalus or chiari). My whole lumbo-sacral spine is involved, but neurologically I'm primarily sacral (I have some L5 features). I walk with one afo and crutch. I have had 3 surgeries in my life (all tethered cord). I have neurogenic bladder. I cath every 3-4 hrs and use continence pads for those occasional leaks. I take Ditropan XL 10mg. I'm dry 99% of the time. I am continent of bowels, but have chronic constipation issues.

Oh, and I am 45 years old and a history professor at MTSU.

[Summer25]

Welcome! My name is Summer. I am 26 and live in FL. I have family in TN though. I am in a wheelchair and cath as well. I have no feeling from the chest down, but was born with no feeling from hips down. You probably don't want to hear how many surgeries I have had...lol. I am a special case. Everytime I have a surgery something seems to go wrong and I end up having more. I have had close to 50. About 10 of those were shunt revisions. However, most of them were at the age of 12 after a shunt infection. Again the result of a surgery that had nothing to do with the shunt. Most were orthopedic, tether cord, bladder, and kidneys. My mom always stayed home with me. Since I have had so many surgeries there really wasn't any reason for her to find a job. My dad does work though. Just wanted to say hi!

[Dodger67]

Welcome! :happy065:
Another "old timer" here! :dance2:
I'm Roger, 42 yo, South African, IT geek and wannabe high school teacher. Father of none but uncle of 5.
I have the "myelo-whatsit" form of SB (its really hard to spell LOL!). My lesion is at L3 but I have some damage at L2 as well. I don't have hydrocephalus or chiari malformation.
I've had about 40 surgeries, mostly orthopeadic and a complete waste of time - they didn't know any better back in the 1970s. I'm a fulltime wheelchair user.

[mhsjacks]

Hey!
My name is Megan and I have an almost 4 month old daughter with spina bifida. I found out during an ultrasound when I was 22 weeks pregnant. Except her head was showing the "lemon" sign. Hers is around the L3 area.
She has hydrocephalus and the chiari malformation too.

1) She had a very rough start at the beginning of her life. Within 4 weeks she had 5 surgeries. One for the back and the other 4 were full shunt replacements.
2) Not sure about the bladder problems because she is only 4 months old but no catheters yet.
3) She had 4 shunt surgeries (full replacements every time) the first 4 weeks of her lift.
4) I actually work part-time (2 days a week) as a labor and delivery nurse. My husband stays home with her (and the other girls) while I work.

As you can tell I am very new to all this!

[mhsjacks]

Also, we were told during her ultrasound that the level was L4/L5 but when she came out it was higher than they expected and is L2/L3.

[bcain]

Sarah had the banana cerebellum, and the lemon shape head on sono. She has Chiari II., and Syringomelia. She is socially continent, for the past 2 wks....Yippee! It's been great. She has no hydro, but has myleomeningocele at the sacral 1-3 levels. She walks, runs. No braces at present, although she started out with some. Has neurogentic bladder/bowel. I worked until she was 4mos. old. That's when I had to start cathing every 3-4hrs, I couldn't find a sitter willing to cath her. And I only worked parttime. So now I'm a SAHM. She keeps me very busy. And I still get to use my nursing skills, I hope to return to work when she's in school. I have been enjoying our time together at home. I worked for most of my other childrens young lives. This is my selfishness....I love kids and she's my last child. MY husband drives us for the far away appointments, it's actually like a date. (She doesn't talk much yet). It was hard to quit my job, but I don't miss it much.

[CMC]

Thank you all for the thoughtful comments. Right now, I am cycling thru feelings of "I can do this" to "I am scared and panicky" over and over. But, this has helped.

[hope&faith]

Just wanted to say welcome. I know this is a time when you are feeling flooded with feelings about your baby and thats totally normal. I think all of us would ride that roller coaster during pregnancy of "I can totally do this" to "holy crap, HOW am I going to manage?" sometimes in the same minute I remember.

My son is 10 months old and a twin. As far as SB goes he has only had his closure surgery and two shunt surgeries, the second one though only because they could not do the "regular" one when he first needed it because he was born too little. Learning about the two "big" surgeries needed for your baby is scary stuff, but they usually go very very smoothly and recovery is really swift. Many of our kids have not needed shunt revisions, but some do, not point in getting too far ahead of yourself though. They will give you lots of information about signs to look out for when its time. and like any other mommy you will swear any time your baby cries, thats a sign, ha,ha but you WILL relax about this in time. I almost never think of the shunt anymore (until Alex gets sick and then my mind goes there right away, is this a shunt issue?) but thats what you'll have your doctors for to call on, ask those questions and get their reassurance.

I'm also a stay at home mom for now but know of other children who have gone to day care with no extra issues or problems. My son does not need cathing at this point but if thats something that your baby needs in the future, you can teach someone how to do that if they are comfortable. I dont know if that answers your questions at all or not? Please know like the others have said, pregnancy was truly THE hardest part, all the uncertaintly without a sweet face to put it all to. Once Alex was here, well I would by lying if I said 'all my worries went away' but a lot of them did and I was left with just all this love and that motherly fiery attitude of "I'll do whatever it is that my baby needs, just tell me and get out of the way." ha,ha.

At only 10 months old, Alex is teaching ME so much about love, determination, resiliency, I really do believe that children are here to teach US, not the other way around :)

don't hesitate to ask any other questions as they come up, or just to check in and get some support, keep us updated when you can
Hugs!!!!

[Jill]

The emotions are completely normal, for sure! I don't have much to add to what everyone else has said. My son is 2 months old. So far he's had just the two surgeries - back closing at birth and shunt at 3 days old. It's so scary and terrifying where you are now, but holy cow the difference when you get to hold your little baby is incredible! Most of that fear goes away and you just love your little one to pieces.

One thing I find is that as amazingly helpful as the forum is for answering questions and getting support, people generally do post when there are problems or setbacks, just by the nature of a forum. Try reading a few blogs to see what life is really like. Look at the pictures and get to know the babies/kids/people with SB. It's normal, happy life, truly. :)

[TysaDawn]

It was only a few weeks ago that I was in the position you are now in. I found out at our first ultrasound @ 17 weeks. Our doctor basically told me that I am young (I'm 23) and we could try again & would most likely have a "normal" child. Hearing the doctor say that our baby could possibly never walk and all the issues he could have killed me. I cried for a week straight!! I had so many question and so many thoughts. I'm glad I found this website because I found alot of support on here. There are moms on here with blogs they've been posting since they found out they were pregnant with a baby who had SB & those helped me out ALOT. Every case is soooo different. No one can tell you your baby will or will not be a certain way, you just have to wait and see. Just because one child had a certain amount of surgeries doesn't mean yours will. I hope you find all of your answer! Welcome to the site!!

[Papillon]

Hi there,

I am an adult female with SB at level L3/L4 with shunted Hydrocephalus, so I'll try to answer your questions by using my own experience:

1/I have no idea what the average number of surgeries are, if there is one, but I have had my back closed and a VP shunt put in when I was born, then my hips put back in place when I was about 5 (they were dislocated, I did not have club feet, though). My shunt needed lengthening when I was 12 and then it blocked a couple of times (over a period of 3 months). No surgeries between then an when I was 18 when my shunt was changed to a VA (Atrial - into the heart) shunt, which they unfortunately got wrong, so they had to go in through the incision on my neck and cut a bit off the shunt and re-attach it - this had to be done under a local since it was less than 24 hours since my previous surgery - I came out of the surgery telling Mum it was FUN!! Those drugs must be fantastic! Unfortunately after those two surgeries I wa back in hospital within 6 months with another shunt blockage, which didn't really get sorted out for another 3 months after that (5 or 6 surgeries in 2 years), but since then (1998!!) I have been trouble free shunt-wise. I have never had any operations on my bowel or bladder and I didn't have a tethered cord.

2/ I wear a pad all the time. I catheterise myself every 4 hours or so, and I seem to be dry most of the time as long as I don't forget to go to the toilet and don't drink too much. I manually clean out my bowels, without the help of an enema or anything - use a latex glove (I am one of the lucky ones not allergic to it - it is common, but not guaranteed that your child will be allergic), and reach in and get what I can out, I can't push very hard, but can a little. I do seem to go between constipation and diarhoea, though.

3/There is never any guarantee about how long a shunt will last - my Dr's have always refused to give me one, saying that it is a human invention and therefore is not fail-safe and they don't want to say it will last 10 years because if it doesn't then they might be in trouble.

4/ I am not a Mum, but my Mum, as far as I know, stayed home with me until I went to school, and then only went to school during school hours - I have two younger (non-SB) siblings, 2 years younger and 5 years younger than me, and I don't think Mum went back to full-time till my youngest sibling was at school. My Dad had (he's just retired) a job that took him away a lot for a week or two at a time, so Mum was the only one around a lot of my childhood.

Hope this helps. This the second time I have written it - the first time I had somehow been logged out before I hit 'submit', so hope this works!!

Love Papillon