recently diagnosed, new here

[hope&faith]

I am very grateful to have found this site, so much of what I have found on line has been so negative, this place seems like a haven. I am 19 weeks pregnant with identical twin boys. One of my sons has been diagnosed with spina bifida by several ultrasounds. I've met with my OB, peri-natologist/chief of obstretrics and have gotten very grim prognosis. They say my son has a very severe form of SB, an open lesion on L1 of his spine, that he will never walk or have control of bowel/bladder, and basically have low quality of life. On my 2nd visit with the specialist, they state that they will be presenting my case to the high risk committee at the end of this week and there was talk about delivering the twins much earlier than anticipated "to give the unaffected twin the best chance at survival". they report being concerned that my son with spina bifida may not make it to term and that if he passes in the womb, so will my other son due to them sharing a placenta. I am obviously devestated and overwhelmed. I want to do whatever I can for BOTH of my sons, and I have a loving husband who agrees that we will do whatever we need to do to provide care and services needed for both of my children, although I can not imagine losing one or both of my children. I know being born too premature has another landslide of risks.

I am already attending a very well thought of childrens hospital in upstate NY, but can't get in to see the pediatric neurosurgeon for several more weeks. I'm not sure where to go or call for a second opinion. Maybe my local SB association?

Also I would welcome any feedback if you or a loved one has any experience caring for someone who has a similar defect in L1.

thank you all for your support and guidance.

[Dodger67]

Welcome! :happy065:
You've come to the right place. We will help you find the right help.
In my not so humble opinion the current bunch of quacks you have "helping" you should all be charged with gross malpractice! I'd bet the only treatment for SB they know is "kill it".

My lesion is at L1 and 2. My quality of life is just fine thanks.
I'm 41 years old. I'm a fulltime wheelchair user since early teens. (Your "doctors" don't seem to have heard of wheelchairs, but we'll cut them some slack as its really hard for such busy doctors to keep up with the latest technology - wheelchairs were only invented about 500 years ago in Germany. Perhaps the news hasn't quite reached New York yet!)
I earn my own beer money working as an IT consultant. I drive my own car. I live in an apartment and only need help with the "heavy" housekeeping chores. I have a girlfriend - the sex is more than satisfactory, thanks for asking. I don't have children but I could if I wanted to. I'm uncle of 5 wonderful kiddies aged 5 to 9. If you look around the topics here you'll see there is a whole range of ways and means for dealing with the bladder and bowel issues.

So lets get started finding the right doctors for you. (Now we wait for folks familiar with NY to speak up)

[Summer25]

The doctors seem to tell you the worst case senerio. Just incase these things happen. In most cases they don't. I am 25 and when I was born my parents were told the same thing. My lesion is a little higher then your son, at T10. At birth I had no feeling from about the hips down. I am in a wheelchair. I have had plenty of surgeries (won't mention how many). I however, graduated high school. I drive. I work. I do everything a "normal" person does. The thing with people that have spina bifida is we were born this way. We don't know the difference. So for us, our quality of life is just the same as anybody else's. So quality of life is totally different between us and a "normal" person. I know I wouldn't change a thing. I have done some things that if I was normal I wouldn't have been able to do. Yea, it has been hard, but it is well worth it. I'm sorry the doctors seem to paint a bad picture. It however, is not as bad as they say.

[Dodger67]

I seriously believe that the SBAA* should agressively work against the "institutionalised" ignorance and excessive pessimism of the general medical fraternity.
It causes a lot of unnecessary anguish and who knows how many unjustified abortions. (Genocide of the "unfit" - just like the Nazis used to do!)

*SBAA because this issue seems to be a problem particularly in the US.

[angel]

[QUOTE=Dodger67;5875

(Genocide of the "unfit" - just like the Nazis used to do!)

I have often thought of it the same way.

Let me introduce myself now that i am done agreeing with dodger! I am 32 years old (on tuesday) and I have a wonderful quality of life as well. I have to say i think my life has turned out better than most other people i know! I have everything i ever wanted. I have a wonderful husband, 2 boys (My son who is 12 and has SBO) and a step son that is the same age, a beautiful home, my own business and have had a very happy life.

Please excuse me if i sound upset but i can't believe some of the things doctors come up with. Let me make something clear and i wish i could make it clear to doctors. They may know the textbook stuff about SB and how to treat it but they don't know shit about living with it. It really hasn't been such a bad thing at least not for me and i am sure there are many others on here that would agree with me. They say the child won't be able to walk. Big deal!! as dodger said there are things called wheelchairs AND most people with SB will agree that the "not being able to walk" isn't a bad thing. People who can walk think that it is the end of the world because they would morn the loss of what they find so important. I guess some think it sets them apart. It doesn't as it takes no more talent or skill to walk on your two feet then it is to do what we do be it walk on crutches or use a wheelchair. It doesn't make them better, it doesn't make them happier, it doesn't make them more useful.
As far as the baby with SB not making it to full term is there a reason for that as i have never heard of SB causing premature birth. Maybe i am wrong on this one but i haven't heard of it. I know i was born full term, vaginal birth, no one knew i had SB till i got here. From what i have been told the doctors told my family that i wouldn't live through the night, then that stretched to a week, then that stretched to a year. Well here i am in my 30's and going stronger than ever.
I was able to have my own child when everyone told me it was impossible. My doctor on the first visit advised me to abort. I didn't because i didn't understand what the reason was for. I was given no reason other than my body is different. It was BS because i went through my pregnancy just fine and my son with SBO was born at 37 weeks. He was born early because i simply ran out of room for him.
I agree also with dodger that they should be charged with malpractice because what they are telling you is the worst case scinaro not what is likely to happen. Ask the mom's on here most will tell you that what the doctor said before the child was born was not always correct!

I hope you find the answers you are looking for here. We will certanly try to help all we can. You say you are in upstate new york i am in Northwest PA and i can say from personal experience that the shriners hospital in Erie is WONDERFUL!! I took my son to pittsburgh and quite honestly i wasn't impressed. He had his spinal fusion done there and the doctor did a good job and we really like her (neurosurgon) but shriners goes above and beyond in all areas at the other hospital he was just a number. The doctors at shriners refered him there because they felt that his fusion would be much more than they could handle. Other than that one thing they have made all the difference in my son's life!! Two of his doctors have even taken me on as a patient!! If you would like to check out the hospital just let me know and i will provide you with names and phone numbers of who you need to speak with.

Angel

[Spiffynikki]

Hello and welcome! My daughter's lesion is very large from t12 to L4 and we were given a very grim prognosis. The doctors at the NICU (neo natal intensive care unit) said she would never move her legs and would struggle with things her entire life.
My daughter is a happy healthy five year old, extremely bright and happy, crawls wherever she wants to go and uses a wheelchair to get around outside the house. She definitly does not have a low quality of life! The doctors will always be grim and give you the worst case scenario, but there is so much hope for kids born with spina bifida today! With all the developmental intervention, occupational and physical therapy out there, you will be amazed at what your child can learn to do, and how happy and independent they can be.

Keep your chin up, this place is a great place to come to for support.

[LisaJoy]

As I college professor and historian, my research specialty is disability history. I've been working on the history of sb for about a year (especially the history of "nontreatment" decision-making -- i.e., "letting" babies with sb die because of their supposed low-quality of life, which was commonly practiced in the 70s & 80s).

Recently I read an article in a medical journal -- it was a survey of 1000 ob-gyns to gage their knowledge about spina bifida, since they are usually the first to advise parents. The article noted that more than 2/3 of the ob-gyns significantly over-stated the incidences of both prematurity and stillbirth in spina bifida. Other articles that I've read suggest that many high-risk pregnancy specialists, ob-gyns, etc., give a prognosis for sb that is stuck back in the 70s -- these people tend to have little if any experience with actual people with sb.

Everything I've read suggests that the risk for prematurity in sb/hydrocephalus where other major defects are not present (major meaning things like anencephaly or trisomy 13 or major heart defects) is no greater than for unaffected infants.

Of course, a twin pregnancy is higher risk anyway.

I've also read that ultrasound and even MRI are only about 50% accurate in diagnosing the level of the defect and they will ALWAYS give you the worst case scenario.

You absolutely will want to talk to pediatric neurosurgeons who are experienced in treating children with sb. They will be much better informed about your son's prognosis. But keep in mind that there is no way to know what your son's functionality will be until he gets here -- and even then he's likely to keep surprising you for years.

I would urge you to resist pressure to put the lives of both of your sons at stake with an unreasonably early c-section.

There's a couple on here -- the Vogelpohls -- who just had twins, 1 with sb, last week. If I'm remembering correctly, they were delivering at 36 or 37 weeks. They (understandably) haven't been back on the forum yet, but keep an eye out for posts by them. I'm sure their experience will be helpful to you.

Ask anything you want and try to stay positive in the face of all the doom & gloom.

And congratulations on your boys! ALL babies are a blessing.

[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.

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

My 2 1/2 year old uses her walker all over the house and we are teaching her to use crutches. She is a very happy little girl.