Recently diagnosed

[Bigwilli]

Hello everyone,

Me and my wife were informed our baby has SB at the 22 week point. It is the myelomeningocele variation. I would like to tell all others parents out there we feel your pain. We were floored! This was so unexpected and totally caught us off guard. We have a deep faith and trust in God and I encourrage others to do the same. I was so angry at first and felt so many fixed feelings from doubt to anger. After a few days of research we have both found a wealth of information on this disease and are taking it day by day. Below are some things I would like to share with other individuals that experience this bad news in their life:

Life doesn't stop for you! God is great and works with cause and purpose!:D
Prognosis is not final! Read around and you will see many encouraging testimonies that differ from original prognosis for child's outcome:)
The main impact appears to be degree of paralysis. Mental condition seems to be normal in a majority of cases.:rolleyes:
The severity of prognosis seems to be type and location of SB defect:rolleyes:
Many kids with SB lead normal/active lives (Most important):p

I would appreciate any input from anyone currently going though this or who has experience with SB. Specifically with L4 location. Again, I am praying for all of you out there experiencing this trying time in your life. I plan on starting a blog site devoted to SB and families affected by it to include my own experiences. Thanks for taking time for reading and responding...

[Spokie]

...*Life doesn't stop for you! God is great and works with cause and purpose!
*Prognosis is not final! Read around and you will see many encouraging testimonies that differ from original prognosis for child's outcome
*The main impact appears to be degree of paralysis. Mental condition seems to be normal in a majority of cases.
*The severity of prognosis seems to be type and location of SB defect
*Many kids with SB lead normal/active lives (Most important)...

Very very true!!

Herewith my comments on above:

* Life doesn't stop - a much better one is just starting!
* My son was supposed to be a) deaf, b) unable to focus and c) dead within a month. He is now almost nine years old, with eyesight and hearing above normal.
* Kids with the same lesions do not necessarily have the same symptoms - the lesion only gives a general idea of what you might expect.
* Anybody out there with SB that's NOT enjoying life? My son's enjoying every moment! And so are we.

[Dodger67]

My 2c worth:
Life always goes on - kids are a hellova lot tougher than most people - particularly medical people - expect.
Prognonstication, except in very broad general terms, is indistiguishable from fortune-telling and thus quite useless.
Degree of paralysis is only roughly determined by the site of the lesion.
Intelligence is unaffected except in the most severe cases of hydrocephalus.
Some people with HC have slight language difficulties such as speaking slower than "normal", but its not related to intelligence at all.

I'm 40 years old, L1-2 lesion, IQ about 130, fulltime wheelchair user, I live mostly independently, drive my own car, earn my own beer money (LOL) and I have good sex too.:cool:

[Bigwilli]

Thanks for the reply Spokie as well as the encouragement! My wife has slowly started reading about this as she was to upset at first and we are both staying positive. It's great news about your boy. I so happy the doctors were wrong and your son has perservered. My experience so far is it seems doctors always side with the worst. I encourage you to share more if you like. Again thanks for the support!

[Bigwilli]

Dodger,

That reply definately made me and my wife smile and laugh. too funny! It's nice to see someone can make it through this and have a sense of humor. We are looking at another doctor that can help educate us more as ours talked way over our heads. I definately have learned the most by reding online.

Have you or Spokie read any positive feedback on prenatal surgery to close the spine? Again, thanks for the reply and encouragement

[Spokie]

Budget is tight, so I can only afford to give my 1cent's worth... ;)

Interestingly enough: Everything I've read (written by doctors at prenatal surgery clinics, so might be biased) sounds positive, but their word use is a little suspicious - surgery may, tests seem, this procedure might, etc etc - plus there's the added risk of complications during such a very delicate operation. Then, of course, it might just be that the doctors are playing it safe, as they always do, sketching worse-case scenarios.

I haven't spoken to anyone (patient-wise) who has first-hand experience in this, though... Anybody else who can help with more definite info?

[angel]

[QUOTE=Dodger67;1253]My 2c worth:
Life always goes on - kids are a hellova lot tougher than most people - particularly medical people - expect.


I couldn't agree with this statment more. I am 31 and have L4/L5 myleo. I think i am a hellova a lot tougher than some that were born without a disability of any kind. I think i am stornger physically in some aspects and definatly mentaly. I have learned not to sweat the small stuff and how to handle hard times knowing things get better you just have to ride out the storm. I am not at all upset that i have SB I kind of look at it as it has given me a lot more advantages than disadvantages!!!!

Angel

[angel]

I have spent my entire lifetime (31 years) proving people wrong. Doctors and family alike. No one knows for sure what will happen and with encouragement, we can do anything we want!!! My mom was the only one who believed that everyone else thought she was horrible for making me do chores, clean my room, and everything else my brother and sister did. She knew that one day i was going to want a life of my own and she did everything she could to make sure i was well prepaired for that life. I now have a child who is 11 years old (he has SB occulta i have SB Myleo L4/L5) I am very happily married (my husband is not disabled) we are both sucessful in our careers and have a great life. No one ever expected any of this out of me nor were they the most encouraging (other than my mom). I showed everyone that this is my life and I am perfectly capable of handeling it and doing well. If you have some faith in you kids and let them be who they are going to be then they will get along just fine even with SB!!!!!

[Barb]

Dodger,


Have you or Spokie read any positive feedback on prenatal surgery to close the spine? Again, thanks for the reply and encouragement
I know you weren't addressing me but I feel like adding a whole nickels worth of my opinion today!

This surgery just started when C was born. A friend of ours who was born a week before C was the 7th child in the US to do this. In the years of watching them grow, I do not think the surgery did anything fabulous for him. He had many of the same issues that C has. Talking to some of these parents they will tell you that the surgery cured them or saved their lives. I think they are dillusional. If they don't get hydro, they say the surgery is the cause. When the reality is that many kids naturally would not have had it. I guess what I am trying to say is that SB is so varied. There really is no 'typical' person to compare to however, the researchers pushing this surgery use everything that the child doesn't get as a victory and direct result of prenatal surgery. The reality is that they don't know that the person would have had that issue in the first place.

**stepping off soapbox**

[blessingsabound]

I think that the thought running through my mind continuously following the first abnormal ultrasound was "Wow, you always think this will 'happen' to someone else!" But on the way home from our second ultrasound, my husband said, "Why not us? There's nothing that should ever say we can't have a tough situation to go through. It may as well be us as the next person." We both agree that this is probably the biggest blessing that has been brought our way, though it may be hidden in the scary prognosis and difficulties that lay ahead. My parent's first baby was born at 7 months and died with in the hour. My aunt and uncle lost an 8 month old in a fire. When I look at their situations, I feel so blessed that Maddy will live a relatively normal life and that we will have her close to hold and love.

I've also thought of how blessed we are to be in this moment in time rather than 50 years ago or before when there hadn't been nearly the progress in treating these children. God has given the doctors, etc, considerable wisdom and knowledge in understanding how to help our babies. Medical science has come so far, and I'm so grateful for that.

[Dodger67]

Sorry to burst your bubble but there has been no really significant progress at all in the last 40 years.
Kids born today are being treated the same as I was. The same operations, the same therapies. The advantage of that of course is that the protocols and procedures are well established and understood.
The only field where there has been some progress is urology. There are continent diversions such as the Ileal T-Pouch that I have, but CIC was new when I was a toddler and it is still the first option for urinary management. I also think pre-natal surgery still needs to prove its worth.

[Barb]

I think that living in a more connected world has helped a lot of people in the SB world though. The access to information and others with sb is proving to be the most significant 'advance' in my opinion. Doctors are no longer the ones who hold all the information and parents and patients are continually demanding a higher level of care than ever before. Parents no longer (in general) hold the belief that their kids should just 'live with it' and all of us are continuing to push the envelope for things to make life more enjoyable. Parents need to hear from strong adult models like Dodger and Angel and adults with sb need the new parents to continue to believe and advocate for more change. ***Now lets all hold hands and sing*** :p

[blessingsabound]

Sorry to burst your bubble but there has been no really significant progress at all in the last 40 years.
Kids born today are being treated the same as I was. The same operations, the same therapies. The advantage of that of course is that the protocols and procedures are well established and understood.
The only field where there has been some progress is urology. There are continent diversions such as the Ileal T-Pouch that I have, but CIC was new when I was a toddler and it is still the first option for urinary management. I also think pre-natal surgery still needs to prove its worth.

Hey, I'll take any advance I can get! :D

[Dodger67]

I don't see the joke except for the rather weak wisecrack about beer money - intended to make the point that I'm not a "useless welfare case".
Please help me out here so I can also laugh with you.

[Michelle]

Hello everyone,

Me and my wife were informed our baby has SB at the 22 week point. It is the myelomeningocele variation. I would like to tell all others parents out there we feel your pain. We were floored! This was so unexpected and totally caught us off guard. We have a deep faith and trust in God and I encourrage others to do the same. I was so angry at first and felt so many fixed feelings from doubt to anger. After a few days of research we have both found a wealth of information on this disease and are taking it day by day. Below are some things I would like to share with other individuals that experience this bad news in their life:

Life doesn't stop for you! God is great and works with cause and purpose!:D
Prognosis is not final! Read around and you will see many encouraging testimonies that differ from original prognosis for child's outcome:)
The main impact appears to be degree of paralysis. Mental condition seems to be normal in a majority of cases.:rolleyes:
The severity of prognosis seems to be type and location of SB defect:rolleyes:
Many kids with SB lead normal/active lives (Most important):p

I would appreciate any input from anyone currently going though this or who has experience with SB. Specifically with L4 location. Again, I am praying for all of you out there experiencing this trying time in your life. I plan on starting a blog site devoted to SB and families affected by it to include my own experiences. Thanks for taking time for reading and responding...

Hi! My husband and I just had our second son Jan. 4th. We too found out just like you that our baby had spina bifida during our 20 week u/s. Per our neurosurgeon our son...Jack...has a lesion around L4, but our developmental pediatrician (her life's work has been dedicated to SB) says that she thinks more like L5/S1 based on his movements. One thing I have noticed in speaking with other parents is that level isn't always indicative of severity...it can vary greatly. So far Jack doesn't have Chiari II, he wasn't born with clubbed feet, and he doesn't have shunt (we are told if we can get to around 1 year without the shunt then chances are he won't need one). He is amazing...just yesterday our early intervention physical therapist told us that if it weren't for his diagnosis of SB that he wouldn't qualify for early intervention services becauses he is on track or advanced for his developmental milestones. I was so happy I nearly cried...to be quite honest I feel blessed to have been "chosen" to have this baby.

I know of 2 mothers who have participated in the fetal surgery...1 at Vanderbilt in Nashville, and one in San Francisco. I know that neither child has a shunt, and one who had a L2 lesion is nearly walking and the other child is walking. If you have any questions regarding the pregnancy, the birth, the NICU stay, the surgery, we have recently gone through this and I would be more than happy to share what I have learned.
Take Care.

Michelle

[Bigwilli]

Hi Dodger,

The attempt at even a weak "wisecrack" was appreciated. To see all the serious postings and to see someone can have a sense of humor was refreshing. No matter the level of attempt. Thanks for your feedback and time and helping educate myself and my wife.

[Dodger67]

Sorry I was being a little obscure - I thought you might be laughing at my mentioning "good sex", so I was making an oblique point that sex is not a laughing matter.

Sometimes I'm just too obscure for my own good!

[StrictNon-Conformist]

Self-obscurity is its own reward ;)

Sorry I was being a little obscure - I thought you might be laughing at my mentioning "good sex", so I was making an oblique point that sex is not a laughing matter.

Sometimes I'm just too obscure for my own good!

[Bigwilli]

Hi Michelle,

Thanks for taking the time to reply! Me and my wife are meeting with the doctor Thursday for the amnio tests then we start discussions with the medical team at U of M. We are doing better than we were a few weeks ago when we discovered our child has SB. I think the prognosis are so varied and that makes it the hardest. Even when the child is born it seems the final outcome may not come for several years. We are excited about our baby coming into the world and just want the best for him or her. Please share how you are doing and your hurdles. Again, thanks for sharing.

[XoBLoNDiE85]

That reply you left hit me just right....you are SO right about everything you said! We are blessed with these babies...and yes at first its tough (VERY tough) and i know when we have our baby girl it's gonna be tough but we'll make it thru like we are now and come out ok =) I just wanted you to know that that comment was very touching and SO true thanks for puttin it in there ppl need to read that kinda positive outlook i think.=)

Laura

[blessingsabound]

I don't see the joke except for the rather weak wisecrack about beer money - intended to make the point that I'm not a "useless welfare case".
Please help me out here so I can also laugh with you.

I apologize if I sounded like I was poking fun. To clarify, what I meant was that I'll take any advances in the medical field (small or otherwise) if it means that Madeline will have an easier time. For instance, I've recently heard of a surgeon with a 85% success rate in a nerve bypass that allows normal function of bowel and bladder. If this becomes mainstream, then I'm thrilled. Sure, isn't a magical cure to take away SB, but it would make life a bit simpler for Maddy, possibly. What I meant as far as "50 years ago" was that I've read that before the 80's there was selective care--babies with thoracic lesions and other abnormalities were often just kept comfortable until they passed on. I'd rather be in an age with higher standards of care. I'm not sure if you thought that I meant that you or anyone else was a "useless welfare case," but if so, I'm sincerely sorry, as that was the last thing on my mind.

[Bigwilli]

Hi Blessingsabound,

I just saw this encouraging story about a hospital near my home. It addresses a new technique to help people with bladder/bowel issues. Hope you find this helpfull!

http://www.wxyz.com/content/news/health/story.aspx?content_id=5E7D05FA-1077-4DFF-A2E6-19C1BC494CD7&gsa=true

[kali]

hi bigwilli....I think what has improved today for people with sb, is knbowledge. internet has a lot to do with it. us parents can share our stories, our success and failures, it gives us support and hope when we really need it. and yes I believe in miracles. having a baby with sb is a blessing and they really are no different then any other child. believe this and the battle is won....

[mommy2cnj]

I know you weren't addressing me but I feel like adding a whole nickels worth of my opinion today!

This surgery just started when C was born. A friend of ours who was born a week before C was the 7th child in the US to do this. In the years of watching them grow, I do not think the surgery did anything fabulous for him. He had many of the same issues that C has. Talking to some of these parents they will tell you that the surgery cured them or saved their lives. I think they are dillusional. If they don't get hydro, they say the surgery is the cause. When the reality is that many kids naturally would not have had it. I guess what I am trying to say is that SB is so varied. There really is no 'typical' person to compare to however, the researchers pushing this surgery use everything that the child doesn't get as a victory and direct result of prenatal surgery. The reality is that they don't know that the person would have had that issue in the first place.

**stepping off soapbox**

With opinions such as that, I'd say you need to STAY on your soapbox. :goodpost: Well, I won't say that your opinion mirrors mine. :dance2: I had the opportunity to go through with the surgery and would not because after having 1 child with sb, I know the risks involved already, and did not want to add any more (birth in itself can be a risk). If I were to have another pregnancy, knowing I was carrying a babe with SB, I would STILL stay with my decision of no in-utero surgery. :33a:

*throws y'all a dime* ;)

[SkyhawkTR]

I am new here, my daughter at the 18 wk 4d ultrasound was diagnosed with SB, lumbar/sacral region. I agree and believe everything that y'all have said. God works in mysterious ways, and as my sister-in-law said to us "God gives special children to special people, and wouldn't give you something that he didn't think you could handle." We are very new at this, Thursday 3 July is when we found out. We have been all over the internet and have been researching everything about SB and other fetal obstacles (defects), and I think that there is some good information from everyone here. We had a hard time for the first day accepting this was happening to our little girl, but as we went through the weekend, we realized that she was a blessing to us no matter what problem she may have, because nobody is perfect and we have to accept everyone as they are. She will have a good life because she has family that do and will love her for all of her life and after.. We won't know the severity of her SB for a little while longer, because the doctor says she is a little too small still to be sure where. But we pray for her. Thank you all for sharing with me and my family your experiences, trials and tribulations.

[Barb]

Welcome to our little club *not meaning to sound flippish at all* This is a great group, you have an awesome attitude and I know that everything will be just fine for you and your little girl. She sounds pretty lucky to have parents like you

[Dodger67]

Welcome!
I believe you all will be just fine - no matter what happens.
Trust me, I'm the "cynical old guy" in this group, I've lived with SB for 40 years and still going strong!

[SkyhawkTR]

Well thank you for the warm welcome everyone.... We go the final results from the amnio, and its the full workup, and everything looks good...no chromosonal abnormalities. We are very thankful for that. We have another ultrasound this week and maybe the doc can tell us a little more about what we are looking at. But I think that everything will be ok and we will deal with whatever just fine. We are looking at this as our little girl, her name is now Emma Grace, and she will be fine, as it were. She not be any different from anyone else in her eyes or ours. Thank you for you support and shoulders to lean on. We will let you know how things go this Thursday.

[ollieholmes]

That sounds a good way to look at it all. I realy like the name.

[Dodger67]

I agree - Emma Grace is a beautiful name!