Recently diagnosed

[NReyes]

My wife is 17weeks and we just found out our daughter has SB (Myelomeningocele). This news floored us and our first reaction was termination out of fear of the quality of life our daughter may have. Of course the picture painted by the specialist was grim. After about an hour of that we decided this can't be the end. We started researching SB and found positive testimonies on sites such as this from parents who have or are currently experiencing the same.

I'm trying to get a grip on myself but it can be so hard. I try to keep it inside for my wife and our three kids (2 girls - 13yr and 10yr, 1 boy - 5yr) and usually lose it on the ride to work and throughout the day. The thoughts are killing me.

We are scheduled to go to Columbia University in NYC on the 28th of April at the Center for Prenatal Ped. Here they plan to get more details through MRI, Cardiologist, Neurosurgeon, etc. We have also contacted the MOMS study and started the screening process for acceptance. Luckily for me Columbia and MOMS have dealt with each other in the past so Columbia is coordinating with MOMS.

I don't know if my wife will be accepted into the study but we hope at the least to be in the right places to get the best care for our daughter.

I'm 41yrs old and my wife is 38. We live on Long Island and at the moment we are a wreck. But I have hope especially reading some of the posts here.

Nelson

[angel]

Nelson,

Welcome to the group. You will find a lot of answers here and even more than that you will find an unbelievable support system.
I am Angel, 32 years old, married mother of a 12 year old son with SBO. I have SB myleomeningocele level L4/L5. I walk with crutches and have since i was 3 years old. Before that i had a walker from the age of 18 months.
I can't imagine how you must feel because when I found out my own son had problems it wasn't so bad because I have it to and I know that it really isn't so bad.
Let me say first that take everything with a grain of salt as it isn't going to be possible to tell everything from the tests that they are doing now. There are so many parents here that were told one thing as a result of these tests to find out when the baby was born that the results weren't completly accurate.
As for quality of life that is a touchy subject. A lot of parents get really hung up on the fact that thier child might not be able to walk. You ask someone that has lived with SB and it really just isn't that big of a deal. When you think of it you probably feel a sense of loss and think of all the things that you can do your child might not be able to. You would feel as if something were taken from you. That would be natural for someone who is able bodied. As for your child if she can't walk it will be so much easier for her to adjust to life because it will be all she knows. I have people ask me all the time "Wouldn't it be great if you could walk one day?" The answer to that is no it would scare the hell out of me because it would be so different from what i know. It would be so different from how i live my life. I would have to learn how to do everything over again. It brings about similar feelings that i would imagine one would have if they were able bodied trying to imagine living life unable to walk.
The truth of the matter is the most important thing one can do for thier child is to raise them as they would any other child. Don't treat them different, expect the same of them as you would if they were not disabled. Realize that they are just like every other child but just require a little extra care and some different tools (such as crutches, wheelchairs, shunts, cathaters) to go through life. They may not require a shunt, some don't require any aid to walk, some do and some use wheelchairs. All these are tools just like eyeglasses they do a job that our bodies can't do for itself.
I as well as others on this site have lived wonderful, and completly fullfilling and independent lives with Spina Bifida.

Good luck and feel free to ask any questions you may have.

Angel

[LisaJoy]

Nelson,

You've come to the right place for support. I'm glad you investigated your options -- so many people come away from the ob/gyn and maternal-fetal medicine specialist with the impression that they have no choice to abort. That is simply not the case! Medical professionals are notorious for being unreasonably pessimistic about sb (partly to cover themselves from liability).

We have many members who have been in your shoes. In fact, I'm pretty sure that we may have one or two in your neck of the woods.

One piece of advice that I have -- the best people to give you a sense for your child's prognosis are people who are heavily involved in treating kids with sb (not the ob/gyns & perinatal specialists, who basically know nothing about living with sb). So you should meet with a pediatric neurosurgeon early on.

Good luck with MOMS -- we'll all be interested to know how it works out for you.

Read around in these threads, look at the pics, and ask whatever questions you want to ask!

I'm Lisa -- 44, sb/lipomeningocele etc., walk with one brace/crutch, college history professor.

[smoop]

Every time I read one of the newly diagnosed postings I feel so burdened. It just takes me back to exactly 4 years ago when I experienced what you're feeling right now. No doubt that this is an extremely difficult trial to face but hang in there, it won't be much longer before you're holding your precious new baby. My daughter, Analise, is one of the greatest blessings of my life. I believe that God doesn't make mistakes.

[janjanwhit]

I have an 8 week old baby boy with myleo sb L3-L5. The day I was told of his condition was the worst day of my life. I wanted to kill myself. I know how much pain you are in. I bet you could never imagine hurting this much. It gets a lot better. The doctors gave me the very worst case seario and advised termination. Friends and faimly did not support me when I didnt go through with it. When my baby was born it all got so much better. I really thought he was a monster growing inside me by the way people talked about him. When I saw him I could only see a beautiful precious little boy. He has only had one op - to repair his back opening after birth. No shunt yet. He has one clubbed foot. He reacts normally and has all normal reflexes. He kicks his legs, just doesnt move his toes! Have a look my my photos. Can you believe that the doctors didnt think he was worth keeping! This website saved his life. If I didnt know that hope exsisted for him I would have terminated. From the moment he was born I know it was right for me to have him. He is so beautiful and I love him so much. God must have made him this way for a reason. He is too precious to be a mistake.

[XoBLoNDiE85]

Welcome! I encourage you to read over the posts!!! The ppl on this forum are heaven sent seriously! We have 3 girls our youngest, 9m, has sb and hydro shunted!! She is amazing and yes the try to get you to terminate and paint a horrible pic of what your life will be like with your child! They were sooooo wrong! She is such a blessing and i couldnt imagine our lives without out my little miracle baby Hannah! I will kepp you and your family in my prayer....it gets better and easier trust m or trust us i guess i should say

[dahliafaolan]

Welcome Nelson!

My name is Ashley, but most people on here call me Dahlia or Dahli. I'm 23, and I use a wheelchair. First of all, let me say that I am sorry that the doctors are attempting to steal the joy of your child from you. If you look around the site, you'll see that this is a common experience of parents of a spina bifida child. Most doctors give very pessimistic prognoses. When I was born, the doctors told my mother that I would just be a financial and emotional burden that would never amount to anything. They also said that I would die before the age of 10. As I said before, I'm 23 now and I am a college graduate.

I know the idea that your child might not walk can be a very scary thing, but it's really not as big of a deal as most people make it out to be. Many children with Spina Bifida can walk (several people on the site do), and many cannot. But if your child cannot walk, your child will never know the difference. Those of us that are born not being able to walk never really feel a sense of loss. Now, I'm not going to lie. There are moments when I wish I could walk, but it's actually not for the action of walking. It is for the certain aspects of intimacy that can only be experienced if you can stand. But I don't consider this as a hindrance on my life.

As for the quality of life thing, it is all subjective. At age 23, I've had over 15 surgeries and 42 hospital stays. I'd do them all over again. Your child's quality of life is determined by you. Just treat your child like you would any other child and your child will have a great quality of life.

[smoop]

Ashley-- You have the greatest attitude! Thanks for being an inspiration to me, as a parent of a child with SB.

~Renee

[dahliafaolan]

You're very welcome, Renee.

[Dodger67]

Hi Nelson
I'm Roger, 41yo, South African, myelocele at L1-2, no hydrocephalus, no chiari, no tethered chord, fulltime wheelchair user, self-employed IT consultant.

[Summer25]

Welcome! My name is Summer. I have myelomeningocele spina bifida. I am in a wheelchair. I have no feeling from chest down now. I have had close to 50 surgeries. I work and go to college. I agree with Ashley on the quality of life. I have done everything a normal person with sb would do, plus some. I played sports. I graduated from high school with a regular diploma. I however, have also been the National Ambassador for Shriner's Hospital. I was a local posterchild for Easter Seals and March of Dimes. As long as you treat your child as normal as possible, to them they will be normal. The close to 50 surgeries I would do all over again except for 1 or 2.

[Gymp]

Hi Nelson...
The waters may seem rough for you at the moment but just ride the wave out,it does get smoother further down river.

Welcome to the forum,I'm Gymp a 52yr old with SB,and quite content with my life so far.You've come to a place with lots of good people and great info.Read around,any questions you've got ask and we'll help to the best of our ability.SB isn't as bad as you think.Damn them doctors for painting lousy pictures.

Gymp

[cadon's mum]

Hi, my name is lorraine and like you i have three other children boy 13 girl 9 boy 6,i also have a 10 week old son with s/b & hydro he is shunted. we were terrified like you , my husband was a total wreck !! (there's no hiding it!). my pregnancy and birth were traumatic to say the least, i had a normal delivery but was so scared of hurting him i stopped pushing and put him in distress! but from the moment he was in my arms i knew that we were going to be o.k. i know that it is going to take lot's of time, love & commitment but don't we give that to all of our children? I Like you am totally new to this but i can say you have come to the right place for all of your question, these people are so positive. you have to follow your heart and do what is right for you! lot's of luck to you both! xx

[Barb]

I know the idea that your child might not walk can be a very scary thing, but it's really not as big of a deal as most people make it out to be. Many children with Spina Bifida can walk (several people on the site do), and many cannot. But if your child cannot walk, your child will never know the difference. Those of us that are born not being able to walk never really feel a sense of loss. Now, I'm not going to lie. There are moments when I wish I could walk, but it's actually not for the action of walking. It is for the certain aspects of intimacy that can only be experienced if you can stand. But I don't consider this as a hindrance on my life.That is such a perfect way to put it. When people pull the 'pity act' with me and Cart, I am always like, "seriously, he doesn't know different". He uses a chair, big deal :D

And Nelson, welcome. I personally feel that the photo albums here are one of the most valuable parts of this site. It really helps you to wrap your head around what this 'looks like'

[NEMOM]

We were blessed with a beautiful baby girl just over 4 years ago. She has myleomeningocele, but it is not who she is. It is a part of her, but it doesn't define her. We are given no guarantees as to the health and safety of our children. A child can be born healthy with no birth defects and suffer an accident, putting them in a wheelchair.

I am actually glad I didn't know beforehand that she has SB. I'm sorry you have had to have drs. tell you the worst case scenario. I can relate somewhat as once she was born and the hospital gives you information with pictures all you see are the wheelchairs. While that was scary at first, it didn't take long to realize that it doesn't matter if they are in a wheelchair or not. If you had a child or spouse who later needed a wheelchair, you would make adjustments to meet that need.

I echo others that God makes no mistakes. She, as well as your little one, is fearfully and wonderfully made. There can be scary times. I and my husband were afraid of the shunt. Now we are thankful for it.

A hymn that I've sang many times took on new meaning for me. In "Because He Lives" there is a verse that goes:

"How sweet to hold, a newborn baby
and feel the pride, and joy he gives,
but sweeter still, the calm assurance,
this child can face uncertain days,
because He lives."

I am so thankful for my little girl. And I wouldn't trade her for anything.

Cindy

[NReyes]

I want to thank you all for the warm welcome and inspiring comments.

We have just returned from Morgan Stanley CH in NYC. From the ultrasound they estimate the beginning at T11 and continues well into the sacral area. They could not see where it ended. There was also a significant amount of fluid in the head as well. The Dr. stated this is a very severe form and our daughter will most likely be a very, very sick child ("very" was said twice).

Tomorrow we return for the MRI and neurosurgeon consult. This is the day that we are supposed to hear from the neurosurgeon about what we are most likely headed for. He will tell us what we can expect our daughter's life to be like.

My wife and I have an idea of what tomorrow will bring. We are expecting to hear the worst. I would like to ask if anyone here can tell me their experience with the same or similar T11 to Sacral opening.

[Summer25]

I want to thank you all for the warm welcome and inspiring comments.

We have just returned from Morgan Stanley CH in NYC. From the ultrasound they estimate the beginning at T11 and continues well into the sacral area. They could not see where it ended. There was also a significant amount of fluid in the head as well. The Dr. stated this is a very severe form and our daughter will most likely be a very, very sick child ("very" was said twice).

Tomorrow we return for the MRI and neurosurgeon consult. This is the day that we are supposed to hear from the neurosurgeon about what we are most likely headed for. He will tell us what we can expect our daughter's life to be like.

My wife and I have an idea of what tomorrow will bring. We are expecting to hear the worst. I would like to ask if anyone here can tell me their experience with the same or similar T11 to Sacral opening.

I was even higher at birth with a T10 lesion. I am in a wheelchair. I have hydrocephalus. I have bladder and bowel problems. I however, also have a normal life. Don't let the doctors get to you. They will always tell you the worst possible outcome.

[LisaJoy]

Many people on this site have had the experience of being told by their doctors that things were much worse than they turned out to be. But also, you should realize that a large lesion does not mean a bad outcome, there's just a higher likelihood of more extensive paralysis. But paralysis is not incompatible with a good life! Regarding the hydrocephalus, I have read that significant hydrocephalus in utero is not a predictor of brain damage because a fetal skull is very soft and flexible. Most of the time, a shunt will take care of the problem. It is not at all unusual for a shunt to be placed at the time the spine is closed.

It is good to be prepared and armed with as much knowledge as possible, but please remember that no one will really know how your daughter is affected until she arrives, and even after that she may surprise you for years to come!

Lisa

[dsmith]

My daughter has Spina Bifida L3-L4. I suggest that you look into banking your baby's cord blood. We had set up to bank her cord blood and we did not know that she had SB until after her birth. We are very thankful that we did. We hopet to start a fund in the Fall to raise money for stem cell research with the hopes that we will be able to use the stem cells from her cord blood to increase her function in the future. The more people that we have with cord blood the easier it will be in numbers to move forward with research.

Additionally, we didn't look into inter uterine surgery because we didn't know our daughter had SB until she was born. But, you may want to look into the surgery with Vanderbilt University Hospital in Tennessee. They poineered the surgery.

If you decide to bank the cord blood, please let me know as I am trying to get a list of children and siblings with cord blood banked. lamanaii@hotmail.com

Best of Luck

Cindy