Spina Bifida ?

74dragonfly · July 2013

Hi,

I'm looking for sucess stories/hope. I just got results of my a/s and the baby has Myelomeningocele Im 20w3d pregnant with a little boy. All the other tests, nt scan and maternit21 were fine. Dr is surprised. She booked us with a specialist tomorrow morning. I'm so scared.

The Dr said everything else looked good.She said it was a good sign he was moving around so much.

I started to google. we dont know the extent of his issues so I dont want to get too scared.

Anyone have experience with this diagnosis?

Please send me any good thoughts and prayers. I'm devastated. I cant lose my baby. I just want him to be able to have a healthy life.

grbnik · July 2013

I am so sorry- and thinking of you right now. I pray that everything will turn out okay. What I have found, is that googling does give you the worst options usually, so to take those for gospel is the worst thing you can do. Make sure you have someone IRL to talk to about your worry as well- a counselor, friend, etc. It really helps to have someone else- especially with pregnancy hormones, that can reassure you that you will get through this.

Hugs

grbnik · July 2013

I also looked this up, and Seattle Children's came up as one of the best places to treat this. Maybe talking to a doctor or nurse in one of their departments may give you some hope.

ucantbeserious · July 2013

KKDRAGONFLY:
Hi,
I'm looking for sucess stories/hope. I just got results of my a/s and the baby has Myelomeningocele Im 20w3d pregnant with a little boy. All the other tests, nt scan and maternit21 were fine. Dr is surprised. She booked us with a specialist tomorrow morning. I'm so scared.
The Dr said everything else looked good.She said it was a good sign he was moving around so much.
I started to google. we dont know the extent of his issues so I dont want to get too scared.
Anyone have experience with this diagnosis?
Please send me any good thoughts and prayers. I'm devastated. I cant lose my baby. I just want him to be able to have a healthy life.

Hi & Welcome. I don't know how many SB moms are on this board. Their is a baby center group dedicated to SB. One of my good friends has a 16 month old little girl who has SB & a shunt. They are probably going to want to decide if you are a candidate for the in-utero surgery. How much do you know about SB?

My daughter has lipomengiomyelocele. I will PM you my email to talk more. Deep breath your little one is going to be amazing.

74dragonfly · July 2013

Thanks everyone. I will update tomorrow.

laurding · July 2013

I am sending you a PM!

heedy07 · July 2013

We were in the process of adopting a 4 yo little boy with spina bifida when Russia banned American adoptions in December

He is amazing, as are all kiddos with SB. Googling isn't all that helpful, because each child is so unique. Even kids who have a similar defect (size and location) can have very different abilities. There are so many resources, doctors, and therapies here in the US - your child will have a great life! I know it's scary and will take some getting used to, but it will be okay and you will adjust to your new normal.

wither16 · July 2013

I work in the medical field, so I have seen a very wide range of SB cases. There is a HUGE range of what to expect. So my best advice (I know easier said than done) is to wait until you have more info from your Drs. Every case is SOOOOOO different, and the last thing you need is more stress. Prayers for you and your family that everything will work out as best it can. There should be a local SB chapter that you could hook up with; has info; support groups, everything. Big cities are GREAT, bc you will have a ton at your disposal at a Children's Hosp.

Junebug060609 · July 2013

I just wanted to send you more hugs.

As someone else who has a little boy in the midst of being evaluated [speech delays, possible autism], I will suggest avoiding Dr Google and YouTube. Your childs case is unique, and those two things have done nothing but bring on anxiety attacks for me.

Jenny952 · July 2013

Sending you big hugs! My 20-month old has spina bifida, myelomeningocele and hydrocephalus. She has a shunt and had surgery to close her back the day after she was born. But more importantly, she is amazing! She is cute, funny, smart and has a great little personality. She moves around in a wheelchair but it otherwise a completely normal and healthy toddler.

It is going to sound very scary right now but it totally is going to be ok. If you do find out your LO has SB, just take what the OB tells you with a grain of salt. They will probably give you outdated information and may even tell you there is an option to terminate. Just get the facts. Where is the baby's lesion? Is there hydrocephalus present? Is the baby moving his/her legs? Then get yourself to a pediatric neurosurgeon STAT! He is the person who will give you lots of information about what this dx means for your baby.

There is a group of SB moms on baby center that is a huge helpful supportive group. Feel free to PM me if you want to talk. I hope everything works out for you!

JackiePedersen · July 2013

Big Hugs -- I have three great stories for you.

My little sister (she is 12 years old now) has Spina Bifida. I was 21 when she was born. My parents were terrified, sad, angry... my stepmom would catch herself saying things like, "We're going to get a new playset for Christmas. Connor would love it, and then the new baby will-- well, I mean.... if she can--- well..." and she'd just be sad. It was a worrisome time for everyone.

My sister is amazing. She was walking by 15months (the doctors told my stepmom that, based on where the lesion on her spine was located, she'd most likely never walk at all without assistance.) She now walks, runs, jumps and flips on the trampoline with my children, etc... Her life, though not without some difficulties, is very very normal. She is VERY smart, top of her classes, has friends, wears cute stylish clothes....... a typical 12 year old girl.

She does have a shunt due to hydrocephalus, and bowel/bladder problems, thus she will need to catheterize herself for the rest of her life (and had to wear diapers up until just recently), and she has nerve damage that prevents her feet from allowing dorsiflexion, meaning she can't point her toes at ALL. So, no tip-toes.... this also causes some wasting of her calf muscles, so she will likely soon be sad that she doesn't have shapely legs like most teenage girls. Additionally, because of the nerve damage, she canNOT go barefoot in unfamiliar places, because she cannot feel the bottom of her feet. If she steps on something like glass or metal, she won't know until it's dug way in and begun to get infected.

But in the big picture that's not bad.
--------------------------------------------------
My senior year in high school, a friend's mother took me in while my mother had to be hospitalized. This wonderful woman raised me as her own that year. I found out later that she, too, had been born with spina bifida. You wouldn't know it at all. Literally. I don't even have a list of her minor complications, because she is such a mild, mild case that she is completely, completely normal. An AMAZING mother, wife, community member, runs various charities.... Awesome, very vary happy woman. So... though she DOES have it, her parents were scared to death for nothing. She had surgery at birth, and is now FINE. I know that's rare, but it shows you how much case severity can vary.
---------------------------------------------------

NEXT STORY: My son, Trevor, has a close friend named Gavin who has Spina Bifida. Gavin can't really use his legs much. He's 6 years old, and man is that kiddo independent! He's fiesty and smart, loves to play with friends and swim, he just has to use assistive devices to get around. He either supports himself on furniture, etc...., crawls, or uses his canes or wheelchair/walker combo. He's a happy child, and his parents are happy too.

You learn to work around these things as they come.

Jenny952 · July 2013

JackiePedersen said:
Big Hugs -- I have three great stories for you.

My little sister (she is 12 years old now) has Spina Bifida. I was 21 when she was born. My parents were terrified, sad, angry... my stepmom would catch herself saying things like, "We're going to get a new playset for Christmas. Connor would love it, and then the new baby will-- well, I mean.... if she can--- well..." and she'd just be sad. It was a worrisome time for everyone.

My sister is amazing. She was walking by 15months (the doctors told my stepmom that, based on where the lesion on her spine was located, she'd most likely never walk at all without assistance.) She now walks, runs, jumps and flips on the trampoline with my children, etc... Her life, though not without some difficulties, is very very normal. She is VERY smart, top of her classes, has friends, wears cute stylish clothes....... a typical 12 year old girl.

She does have a shunt due to hydrocephalus, and bowel/bladder problems, thus she will need to catheterize herself for the rest of her life (and had to wear diapers up until just recently), and she has nerve damage that prevents her feet from allowing dorsiflexion, meaning she can't point her toes at ALL. So, no tip-toes.... this also causes some wasting of her calf muscles, so she will likely soon be sad that she doesn't have shapely legs like most teenage girls. Additionally, because of the nerve damage, she canNOT go barefoot in unfamiliar places, because she cannot feel the bottom of her feet. If she steps on something like glass or metal, she won't know until it's dug way in and begun to get infected.

But in the big picture that's not bad.
--------------------------------------------------
My senior year in high school, a friend's mother took me in while my mother had to be hospitalized. This wonderful woman raised me as her own that year. I found out later that she, too, had been born with spina bifida. You wouldn't know it at all. Literally. I don't even have a list of her minor complications, because she is such a mild, mild case that she is completely, completely normal. An AMAZING mother, wife, community member, runs various charities.... Awesome, very vary happy woman. So... though she DOES have it, her parents were scared to death for nothing. She had surgery at birth, and is now FINE. I know that's rare, but it shows you how much case severity can vary.
---------------------------------------------------

NEXT STORY: My son, Trevor, has a close friend named Gavin who has Spina Bifida. Gavin can't really use his legs much. He's 6 years old, and man is that kiddo independent! He's fiesty and smart, loves to play with friends and swim, he just has to use assistive devices to get around. He either supports himself on furniture, etc...., crawls, or uses his canes or wheelchair/walker combo. He's a happy child, and his parents are happy too.

You learn to work around these things as they come.

Do you live in southern Mn? If so I think I know Gavin! My dd has sb too and we met him and his family at a picnic last year. So funny!

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