Mad!

[misty]

Does anybody else get really, really, REALLY MAD when pregnant women come on here scared to freaking death because their doctors have given them outdated, false information??? Isn't there anything we can do about it? I can't help but wonder how many of us are needlessly killed for no legitimate reason!

[excitedmom]

I totally agree! I would NEVER abort a baby, I've always been prolife, but I could imagine that a very high percent of babies that have sb are aborted because of it. It is really sad how the doctors make us think that our babies are like some little aliens that have no chance at life. I couldn't imagine my life without my bg. She is just like my other children she just has a shunt and can't move her legs.... but WHO CARES?

[Gymp]

... Isn't there anything we can do about it?

We are....We here at the forum are informing and educating parents to be that SB isn't as bad as it's made out to be and that the doctors who paint the horrible picture of it are wrong.

Gymp

[misty]

But what about the ones who don't find us?

[Gymp]

Well...Hopefully they will...

[Justy Me]

Does anybody else get really, really, REALLY MAD when pregnant women come on here scared to freaking death because their doctors have given them outdated, false information??? Isn't there anything we can do about it? I can't help but wonder how many of us are needlessly killed for no legitimate reason!

I've often wondered the same thing. It's completely ridiculous this is still happening

[Dodger67]

I've wondered about the possibility of a legal solution.

The concept of "informed consent" is an important part of medical ethics.

It is my position that consent cannot be valid if the information it is based on is rubbish.

[Justy Me]

I've wondered about the possibility of a legal solution.

The concept of "informed consent" is an important part of medical ethics.

It is my position that consent cannot be valid if the information it is based on is rubbish.

I would say I have to agree with you there. In fact, calling it "informed" is hilarious

[cadon's mum]

Just wanted to say that on diagnosis of my son i was also given worst case scenario by the sonographer, she offered termination but i had already made up my mind that i was keeping my baby. I then had to come back a couple of days later to see my OB who also gave me worst case scenario but then added that based on the level of my babies lesio this probably would NOT be the case and that there was NO REASON why i should not be able to keep my son. So maybe things are changing a little or i just got lucky!!!

[NerdaliciouS]

Yeah... I wish there was more.
But what can you do? I really don't think they're gonna change their ways...
I always wanted to do a Terry Fox inspired thing and raise awareness for a bunch of stuff, but no idea how I'd even do that, so... lol.

But I mean, I shouldn't be walking... Or talking... Or going to the bathroom by myself... Or having a fully functional brain, lol.

It gets irritating. You know, I STILL get people going "Holy crap! You have spina bifida!? But you can walk! And talk!" It's just... Are you serious? Get your damn facts straight!

I made a post before about my GP not signing papers because he doesn't believe SB is a disability. So... Pretty Effed up if you ask me (Getting a new one, BTW ;)).

They're just the knowitalls, the rest of us are "miracles" or something rather. Or at least, that's what the guy wanting to pray for me at the mall said...

[Dodger67]

Let's not get started on mall preachers! :puke:

[Jill]

YES YES YES!!

I take it way too personally when I hear about mothers contemplating termination. I mean, I know it happens, but all I see is my son and I feel like I'm being told he isn't worth it. So wrong!!

I know a bunch of us are trying to get our gorgeous kids' faces out there. Like, if more people SEE what SB is like and see US, us mothers of children with SB that aren't being crushed or overburdened by our children, then maybe they'll remember that if they're ever getting the news. Or maybe they'll see our blogs because they know us from some non-SB thing and they'll pass the link on to a friend of theirs when they get the news. Just somehow get it out there. I have had more than one woman tell me that they've changed their mind about automatically terminating in case of a diagnosis because of 'knowing' Kingsley. No better thing to hear.

My husband and I are also planning on getting on the Parent Advisory Committee at our local children's hospital one of these days. We want to make our story known and hopefully find a way to discuss with the OB's what they say and how they say it.

[LisaJoy]

Jill, I love your blog!

[Jill]

Thanks :) :clap2:

[sean]

But what about the ones who don't find us?

People power, we are doing it, nothing is hidden anymore, if they're out there, they will be found.
It is happening, SB is being talked about all around the world like never before. Information reaching the deepest corners (of the free world!).

TV the other day. some guy being interviewed, I don't know, maker/actor of some jackass type movies. Talking about his needing to cath daily, think it was the Graeme? Norton talk show. Before that was a movie, Shallow Hal, a guy with SB in the cast. There was another reference on the radio that day.
We are connecting individually/globally like never before.
I think it's a better time than ever to be born with SB, (um.. lol) in our freeish, democratish, assumed developed countries.

Not sure if it's like, when I bought a Mini Moke (Calafornian), thinking I'd be the only one, only to realise they were everywhere,...???arrogance/ignorance,
BUT as I have outed/accepted my SB over the past few years, I am seeing hearing reference to SB regularly (besides us at SBC).

Here in OZ, seems like the last 5/10yrs SB has found a place, a spot light of recognition. I think similar in most developed countries.
I really believe we are being heard. As long as we keep talking.....and damn it!!! ...we need to get louder for those who can't hear us.

I think all we can do, individually, is keep talking, tell it as it is warts and all.


ps. we are becoming very common lol.

[janjanwhit]

I am VERY mad. I was going to terminate and It was only the fluke that I found this website that stopped me. I was lied to by my doctor. People trust their doctors opinions and thats why so many babies with sb are never born.
I now spend my time showing off Fergus and I 'flaunt' his sb every chance I get. I just want people to know what it really means and maybe he might save another baby being aborted.

[Amnada]

It does make me MAD MAD MAD!!!
I was so lucky and grateful that I found this site the night of our diagnosis.

I have been trying to do my part by talking to nursing students about life with a child with spina bifida is. That it isn't some horrible thing, but something quite managable. I always bring Nick with me.
I also work in a hospital with obstetricians and I'm toying with the idea to ask if I can do a presentation at rounds to them. So the next time they have to give a diagnosis of spina bifida to a mom, they will already have in their head an image of what spina bifida looks like - Nickolas!

I hope that with all my talking and my family and friends and how proud I am of Nickolas and to talk about spina bifida, that I have made a difference in someone's life. Maybe not today but one day.
It doesn't seem like a lot and I wish we could do more!

[Kari]

I had unusual circumstances regarding perinatologists because I moved to another state in the middle of my pregnancy. I have to say that my first perinatologist (in Indianapolis) was incredible. She and the genetic counselor were so caring and supportive. They were thorough and realistic, without being negative. There was absolutely no discussion about termination. She knew my religious preference (from paperwork), so after all was done, she asked if she could pray with us for our family and baby, and told us that we were going to be amazing parents for our beautiful boy.

We had to switch doctors shortly afterwards b/c of the move. My second doctor that I've discussed before was absolutely horrible. I called the first one back and told her everything, and she worked to find another doctor for me. She then called the new one and told her everything that had happened and explained what type of doctor (caring and supportive) we needed. The third doctor (actually was a large group of perinatologists in Cincinnati) was fabulous, and I have absolutely no complaints about any of them in the group.

I still visit doctor #1 in Indy about once a year. I take Zach with me every time. Usually I take cookies/cupcakes from a local bakery along with a thank you card for the office. I am continually reminded how influential they were, and how they helped me have a positive attitude, yet realistic understanding of SB and my son. The doctor, genetic counselor, and office staff are so thankful that we stopped by, and they like to take pictures of us and hang them in their offices. They said that unfortunately, they almost never see the babies after they are born.

I just wish there were more doctors like #1 and #3. Unfortunately, too many of them are like #2.

[n3rdchik]

I agree. It doesn't seem like those prenatally have been given accurate, factual information. How can they truly consent to either termination or continuation of pregnancy?! I do think that people need to be aware of the worse case scenarios, but also the % of SB cases that result in that - AND the % of people (90%?) that are managable (knowing that managable is up for interpretation.) I wish that the US had universal health care - I know that it would remove $$$ concerns from the equation.

[n3rdchik]

I guess my comment is more US-centric...

For those in more enlightened countries with Universal Healthcare - Did cost come into the picture at all? Were you asked to terminate for the "common good" or anything like that?

[Jill]

No, no mention of costs at all. Do they use money as a reason to terminate? I know money is a reason for pro-abortionists that say any child identified as having a disease/disorder that will be taxing on society financially should be aborted. I guess that would be moreso in countries that have universal healthcare then. Hey! Abort your baby so our taxes don't go up! kthanx.

[n3rdchik]

In the US, cost is definitely a factor. I have no experience myself as Sagan was diagnosed at birth, but a couple expecting a daughter with downs syndrome was told it would bankrupt them (which seems likely since before the Healthcare reform, insurance could drop you for basically an reason.). Cost basically forced my grandfather off the ventilator resulting in his death rather than leave his wife destitute.

A big scare tactic against UHC in the US is to float the idea that the disabled and elderly would get less care - and I was wondering if that was true.

As a pro-choice advocate, I am just as horrified as you that the medical community is supplying inaccurate and misleading information to women. To abort under duress, with erroneous information, is horrific.

[sean]

More power to you/us. Exposure, the more we are seen to be living our full lives the better. Amazing how a vision, a few words, a hint of recognition can..steer/change thoughts and opinions. And for those alone on the fringe and beyond, the mere mention of something to relate to, is life, hope. I was there hanging on to the little I heard or read best part of my life...............now, please talk to me about incontinence, anything bladders and bowels no problem...and generally people seem interested/relate. I think it's getting easier/acceptable to talk poo and wee.

2 out of 3....not bad.:happy065:

What happens if we take the mighty dollar out of the equation........????we die when our time is up?

[LisaJoy]

Just to clarify -- in the US, under the current "system" (or lack thereof), people who are insured through their employers under group health insurance CANNOT be dropped at all. This represents approximately 2/3 of the population under 65 (persons 65 and older are covered by medicare and also cannot be dropped for any reason except non-payment of premiums). Insurers can and DO drop people on their individually-purchased insurance policies for just about any reason.

So if the family with the Downs Syndrome diagnosis was insured through their employer(s), it was still misleading for them to be told they would be bankrupted. And even if they weren't , or their employer-based insurance didn't have very good coverage, a child with Downs Syndrome is eligible for additional state and federal medical programs, as well as services through public schools. In most states, an uninsured child with a severe disability is automatically Medicaid eligible from birth to age 18 [income rules vary]. In fact, the lower income the family, the greater the likelihood that they WON'T suffer serious financial burdens from a disabled child -- at least from medical bills. Of course, if one parent has to quit working to care for the child, this opens up other issues.

I say this only to point out that it is seldom, if ever, appropriate in the US (or elsewhere) to use money as a reason to abort a baby with a diagnosis of a disability. I'm convinced that even when economic arguments are used by healthcare providers, social workers, etc., (whether under a national healthcare system or not) the primary motivation is really intolerance of disability -- the view that such people are a burden on society. I do think many parents, faced with these arguments in the context of their already overwhelming fear and anxiety, are swayed by the economic arguments to make the decision to terminate. It may be easier to exploit this anxiety in the US, but I don't think there is any objective research to establish this.

It would be interesting to do a comparative study of the reasons for abortion in places like the US, Canada, Australia, the UK, to see if a prenatal diagnosis IS in fact more likely to result in an abortion in one place than another. But I believe that the reasons for abortions are not documented in the US (I think it is not even legal to do so) -- don't know about other countries. But even if it could be done, it would take extensive research to determine all the factors that come into play.

[n3rdchik]

@Lisa - I would also like to see research done.

I don't think you can discount the money issue. Just because you have employer based health insurance, doesn't mean it can't crate huge bills and costs. 20% of 100K is still 20K... (Most non-HMO's only cover 80%) I know my friend/acquaintenace ended up having to leave his free-lance work to earn less at a corporate job for the benefits.

But I think you are right - I think fear/intolerance of disability is the major issue. I really think the OB's have a responsibility to explain the assistance (Early On, CHIP, Medicaid) out there and offer some awareness training.

There seems to be more love and understanding if you were hit by a bus, rather than if you were born with a disability. I know that I had several jerky things said to me that while disguised in noble phrases boiled down to "I can't believe you brought a disabled child into the world."

But count me in as MAD. I just don't think the culture in the US will change until we have some form of UHC.

[Liznjohn]

As correctly pointed out, it is education that will help. I can't imagine how many beautiful children never had a chance because of the antiquated information mothers-to-be are receiving. Many doctors are incapable of independant thought, that is, they repeat old articles or textbooks that by definition are outdated without consideration of advances in treatment. Worse yet, too many have no experience with individuals who grow and live great lives!

Interestingly, even though Childrens Hospital of Philadelphia (our place of treatment and diagnosis) has a great deal of experience in SB, we were never offered to talk with someone whom has SB so that we can ask all those "quality of life" questions like pain, marriage, having babies, ect. A counselor with first-hand experience would have spared us many hours of uncertainty and pain. Thank GOD for Barb, the moderators and this site!

What I have been pondering is a way to involve the primary and tertiary care centers that deal with this and work with them to offer such services or just brochures. If nothing else just distribute this site to them! Also, I ponder the SB Assn's position on something like this? Misty, its just a logistical nightmare to correct this very real problem, but I for one am in full agreement with your outrage.

John

[hope&faith]

This is a great thread. I was able to recently get into contact with another young mother locally who has a three year little boy with SB. I have been unable to find any one else locally and the local SB chapter does not seem to be very active and has yet to return any of my calls. The other mother said she had been to our clinic and has only met older children with SB, no one younger than about 6-7 years of age in our area. I found this odd given the statistics of SB. Then we started talking about what we were told prenatally (by two different local hospitals and doctors). It brought back the emotions of that time. We were told HORRIFIC, completely untrue information and were encouraged multiple times to abort "for the good of our child" so they wouldn't "suffer". I don't know why it didn't really dawn on me before but the odds are high that way too many new parents are doing just that. Many of my "neighbors" likely because of these doctors and what they "preach". These poor parents are terminating because they think its the "humane" thing to do for their child, so they don't "suffer" or have "poor quality of life."
I was a mess of emotions and obviously couldn't think straight at that time during my pregnancy, there were other complications other than SB but now that time has passed, I'm just plain MAD. I talked to the other local mom and said I had thought about writing a letter to this doctor before about Alex, about how incredible both of my boys are but now I just couldn't put it off any more. The problem is when I think about this particular doctor, the HEAD of obstetrics no less, I want to speak ugly and really tell him how I feel but I know that ultimately won't get me what I want which is for him to possibly learn something about a real person with SB, not a text book and I want them to be able to give out my name and number for any expectant parent receiving the diagnosis.
Even if our story can help one other family, its worth it. I'm in the midst of that letter now and will include pics of my boys and am also cc'ing it to my OB, and the high risk clinic where I finally delivered.
Like the others have said, I HAVE to believe that forums like this, facebook, blogs, where we are out there can provide some awareness, education, even for friends of friends so that SB is not this scary, terrible "unknown."
wow I wrote a book, sorry.
Holli

[petiteblond]

I'm not mad. Doctors should give the worst case scenario because what happens if the baby turns out worst than expected? Some parents might abandon the baby.

For most women, the purpose of going through pre-natal testing is to weed out what they can't handle/don't want. Whey go through pre-natal testing and waste money if they are going to accept whatever they get?

[Kari]

For most women, the purpose of going through pre-natal testing is to weed out what they can't handle/don't want. Whey go through pre-natal testing and waste money if they are going to accept whatever they get?

This is not true for everyone. I, and many women I know, went through all prenatal testing so that we could be physically and mentally prepared for whatever was in store. I had prenatal testing done with all three kids, and knew at 16 weeks that Zach had SB. Because we knew in advance, we had plenty of time to prepare, research, meet his future surgeons and other doctors, have extra prenatal care and monitoring, arrange for care for our girls for the time he would be in the hospital, and get acquainted with others from our local SBA chapter.

[n3rdchik]

Petiteblond, I don't think anyone is saying the doctors shouldn't give the worst case scenario, but it should be accurate, current info. In addition, they should let you know the range of experience. Just like when they give you informed consent for anesthetic - they discuss the risk of stroke and death (worst case) and then say this happens in 0.001% of cases and then move on to talk about nausea and gas pain, which is way more likely and manageable. It sounds like the OB's never get to the likely and manageable part.

[Dodger67]

Exactly! Most of them tell ONLY the worst prognosis - which as we all know is in reality extremely rare.

[hope&faith]

I agree that they should give possible scenarios, no one wants to be in the dark as to what to expect. and it did help us prepare but most parents I talk to are told VASTLY untrue, horrific things will the slant of wanting to encourage termination. We were told Alex would likely be a vegetable, completely cognitively impaired, unable to sit on his own, have a very poor quality of life. While maybe some of these things were possible to happen, it was not told to us that way, it was told it was LIKELY. It wasn't until I found this board and another board that I found hope. thats all we want the doctors to ALSO give
Holli

[Jill]

This is not true for everyone. I, and many women I know, went through all prenatal testing so that we could be physically and mentally prepared for whatever was in store. I had prenatal testing done with all three kids, and knew at 16 weeks that Zach had SB. Because we knew in advance, we had plenty of time to prepare, research, meet his future surgeons and other doctors, have extra prenatal care and monitoring, arrange for care for our girls for the time he would be in the hospital, and get acquainted with others from our local SBA chapter.

Exactly they same here.

And FWIW, no one gave me the 'worst case scenario' for my daughters. I wasn't warned that they might not be smart or cute or athletic. No one told me they may be colicky or take years to toilet train or that they might have autism. When they told me they were girls, no one offered an abortion. Why was that? Shouldn't I have been fully informed and offered (repeatedly) the option to terminate their pregnancies? I don't understand why it was okay for the doctor to do that for my son, but people would be outraged if they had offered that as many times for my daughters. Why is his life not worth as much?

[NerdaliciouS]

I don't understand why it was okay for the doctor to do that for my son, but people would be outraged if they had offered that as many times for my daughters. Why is his life not worth as much?


And you know the REALLY funny thing? A child with SB can still be terminated right up until they're about to pop.

My mom didn't know she was pregnant until roughly 2 weeks before I was born, and they still asked if she wanted to abort me. There is no way that would be asked (I'm not even sure it's legal! O.o) if it was a "normal" child.

[Jill]

And you know the REALLY funny thing? A child with SB can still be terminated right up until they're about to pop.

My mom didn't know she was pregnant until roughly 2 weeks before I was born, and they still asked if she wanted to abort me. There is no way that would be asked (I'm not even sure it's legal! O.o) if it was a "normal" child.

Yeah, I'm pretty sure there is no 'illegal' time in Canada to have an abortion. Just very frowned upon after 24 weeks and harder to get someone to do it. But still legal.

[Amnada]

Hope&Faith, I wrote a similar letter, but went farther than sending it to this OB (ALSO the cheif of high risk obstetrics!) and hospital, but also to medical schools in Ontario. And the society of obstetricians and gynecologists as well as radiology.

Yes telling this one doctor off would help me. But I want to get to the source of the problem!

[misty]

Hope&Faith, I wrote a similar letter, but went farther than sending it to this OB (ALSO the cheif of high risk obstetrics!) and hospital, but also to medical schools in Ontario. And the society of obstetricians and gynecologists as well as radiology.

Yes telling this one doctor off would help me. But I want to get to the source of the problem!

If either of you get responses, let us know! I'd love to hear what they have to say!

[Gymp]

...I wrote a similar letter, but went farther than sending it to this OB (ALSO the cheif of high risk obstetrics!) and hospital, but also to medical schools in Ontario. And the society of obstetricians and gynecologists as well as radiology....

Right On !!!

Gymp

[sean]

Thanks Amnada.....onya!

Possible scenarios, worst case scenario. All a bit vague, yet dramatic.
What are they reading, or not reading. I wonder is there current data, research, peer approved, stats', evidence................written and presented in the very special way that these very special guys need/demand to satisfiy thier very special allmighty learned scientist, self-important...ego-maniac, time is money....next!, selves.
(Who I am so gratefull for and indeed admire and respect)

A document, a paper...?????hacked???? sent to every hospital, global.

!!!!!!!!!ALERT!!!!!!!

STOP THIS PRACTICE!!!!!

Current facts and references.

excuse me, idealistic me, but I'm thinking (technology) how difficult would it be to reach these very special men (a few moments to read a few pages (2010)) like on mass......wham! I know, me, big ideas, dreamer.
We need the most respected learned dude on the planet to write the breif, then we need a really good computer hacker...lol.

A bomb (figuratively speaking) to go off under every OB, URO, NEURO...........lol, anyone gist', ist, ology' itian', your majesty, in a white coat (or Armarni).

[Liznjohn]

Doctors from a medical legal standpoint as well as attempting to be thorough must give the "worst case" possibilities. We went to Children's Hospital of Philadelphia to the fetal diagnosis center. My wife and baby were given the most thorough exam I had ever seen. Hours later we met with the director whom was extremely thorough and quite scientifically oriented. He never pressured us either way on termination, but was quite stark on the statistical possibilities.

Everything was excellent with the exception of not having the counterbalance of counseling on what it would be like to live with SB. We never recieved that aspect of it. To most here it is a known entity and its challenges are accepted and routinely overcome. However, when one hears of SB for the first time when referring to their own child; it can become a monster in the minds of the mommy to be.

Love the idea to volunteer time to counsel for high risk centers.

John

[Jill]

I just don't understand why they have to give you the worst case scenario? Why? What is to be gained by hearing the 'worst' thing that could possibly happen to your baby, even if the odds are so minimal? Why are they not also obligated to say the best case scenario? It's so slanted and obviously leaning toward pushing you for termination, regardless of whether or not they say the words.

When Kingsley was diagnosed we were told:
His lesion is in the sacral region
Sacral effects x,y,z
He has Chiari
The problems with chiari are feeding, swallowing, breathing, etc., but they might not happen
He will not walk (wheel chair bound)
He will not be toilet trained (diapers always)
He will be cognitively impaired
He will develop hydro and need a shunt


No one said:
Sacral means he'll probably walk with support
There are ways of having social continence and most do it just fine
Shunts are manageable
He'll be brilliant
He'll still be an awesome little boy
Chiari is not often symptomatic
His sisters won't care that he has SB

And no one definitely said:
He might walk independently
His lesion is so low, maybe he won't have bowel/bladder problems, or at least not for a few years
He doesn't have hydro now, so maybe he won't even need a shunt
He can still be an Olympian and a doctor if he chooses

ETA: I shouldn't say 'no one said...' because the neurosurgeon eventually did say that when we met her, after we had to repeat multiple times that our decision was firm and we wanted to get on with the referral and meet the doctor that was going to help us.

[sean]

:puke:This is literally last century stuff.


At my ripe age, this lie is at the root of my life long mistrust of professionalisms.
Traumatised by mortality issues and dread of the future, didn't wake up to it until I past my supposed 'dead' date, 30yrs old!
I had 30 yrs of ists', eons', ology', itians', docs', tests, surgeries, treatments.......at 30 I still knew no different......expecting to die any time. (screwed up my life path big time).
Blind faith...........mistrust and disbelief, big chunk of my character now.

It makes me sick.......a painfull insult!!!!!

A huge BUT, as I have lived and learnt, even people lost in thier "professionalism" are mere mortals first and always. I still don't believe or trust (medical) professionals (to have any idea as to what they are doing....a bit of plumbing?)

I recognise the personality, perhaps more so than the expected professional.
They are people with the same amount of prejudices, beliefs, biases, that 'cannot' be masked by "professional".

(2nd opinion should be mandatory!)

I'm sure/know, religious faith can sway/demand professionalism to take second place. As must political ideals, money! (sorry, nothing to do with giving, nurturing life), social standards/upbringing, peers......
They are people with agendas' like all of us. (we may be thinking survival and life in different terms to institutionalised folk with open incomes, thier struggles are the same, on a different level.) They have good days and bad days that must alter thier ? bedside manor/professionalism.

It's a freak out as to how insecure (in themselves) my Doc and Uro's are. Recently, obviously got my Uro on a bad day, pleasant enough, nothing sorted, his mind was over it, out there, clearly more personal than professional. Peace to him, but I (not unusual) I was a mere pawn for a few hours.........hello! (I still expect too much)(of 'people').

BTW, I've had a couple of surgeries where the religious faith of the surgeon clashed with my homosexuality to the point of neglect and abuse...hence the second surgery.....(again sent/placed on the toughest life path....kicked to the curb!).
Tramtised speachless, made a few feable attempts to speak up...I just want to vomit!
A while back I tried to find him, just to send him a letter...an update...lol. I got a few cagey responses telling me he has left the country and can not be contacted.
I am soooo not surprised. (conselation! I'm here free of mind and ?body. I expect he's a basket case eating shit in Pakistan) (no offence people of Pakistan or the faithfull)


excuse me and thankyou...don't want be thinking of this today.

I feel I have and still forgive ignorance...that continues in us all................I'm trying to be all forgiving...........BUT WHAT THE ........!!!! are they learning in what 10/20+ years of study????? What about humans as people.........der!
must go.....aaaaaaaaaAAAAAHHHHHHHHH!!!!!!!!!!!!!!!


sorry, but clearly the information/advice given 'and not' given at this time has the ?power to lead you on....all you hear......the worst!
Clearly the psycho/social issues I deal with are a result of this.

Havin' a rave about things past!:puke:

[Williefayj]

Elijah was diagnosed with SB when i was around 12 weeks prego. So after the long and intrusive ultrasound that we went through, the doctor decided to tell us our options. She wanted us to know that the lesion was low level, and explained it to us and then said that we should do an amniocentisis so we could know more, have research done, and maybe decide to terminate if the test showed the baby might not make it. I don't think the doctor liked it when I cut her off in mid sentence after that and said not an option. She really wanted us to do the amnio thing for reasearch and put the health of Elijah at risk. I was not impressed to say the least. I pretty much tuned her out after that. Because of the hospital we have here and the medical mall that we are lucky to have access too I had many refferral apts with the neurologist, developmental pediatrician, the urologist and physical therapist before Elijah was born. The advice and news varied from each person. One moment they would tell you that he would never walk and he would always have this problem and that, then the next they would tell you that since his lesion was so low that the effects might be minimal. After months of that crap and the stress of being afraid of doing a c-section even though it was planned, I was just ready to have my son born so we could get to the meat of any issues. I will tell you that even though I couldn't see much when he was carted out after the c-section I wanted to shout out loud when he was moving his legs around and yelling at anyone in the room that would listen. :) I am currently preganant again and am due in Jan. Because of Elijah they wanted me to do all these tests and extra stuff and I decided that I'm not going through that mess again. They can't do anything while the baby is in the womb anyway, so unless they detected something on the Ultrasound we were going to wait until she is born. No extra tests, and humdrum docs. No amnios and planned c-sections. No fourteen million refferral apts to tell me the worst thing that can happen. When Leslie pops into this world, then we will deal with any problems she may or may not have.

Now granted, if something would have come up, I would have made the plans necessarry to take care of her. But I was not doing extra tests and be sitting on pins and needles the whole pregnancy because there might be a chance that something could be wrong. Some of the doctors we had for Elijah were great, and some could go get bent. Even now I don't like his urologist too much, but he's the one we have to go through. He's not a bad doctor, I just don't like him. Anyway, I do wish there were some way that women could be better informed about the options and not everything be so gloomy and doomy.

[printemps]

"It gets irritating. You know, I STILL get people going "Holy crap! You have spina bifida!? But you can walk! And talk!" It's just... Are you serious? Get your damn facts straight"


I hear ya I har ya I've had this reaction too - when I have to explain to some nimrod about why my legs look they way they do or explain about the afos - why would someone ask any how ? what nerve - and where do they get their info about sb from an outdated textbook ?

[weelz]

haha dont tell me i cant do something unless you wanna see it done.

i am a 24 year old wheelchair bound college student pursuing a degree, granted a little late but there you have it, in developmental neurobiology with plans to continue on to PhD level and get into research to help people with SB and spinal injuries as well as other situations to gain use of paralyzed limbs and walk and do all the things they were limited with assistive technology for doing. my ideal job would be that of lead researcher at the Christopher Reeves SCI research facility. when people look at me and judge me for my SB i can easily break into the speech i just gave on my future plans and that quickly shuts anybody up instantly and the looks are HILARIOUS. i dont care what people say and pity those who are ignorant and stupid. i pity the close minded and bitter of those who have disabilities as well because they simply cannot enjoy life to the fullest if they are always bogged down by others judgement or actions or comments. as it is said %$^& happens, but its those who let it effect them that are missing out...im not about to let that happen to me. if your life has given you lemons, find someone whose life has given them salt and make a margarita!!! PARTY ON GARTH :26aa:

[Dodger67]

Heard another version of that:
"When life hands you lemons, call me, I'll bring the salt and tequila!" :sign0008::sign0021:

[petiteblond]

The doctors are just looking forward to abort so they can earn more money!

Earlier this month, I visited a dentist. Even though my wisdom teeth haven't erupted yet, my dentist suggested to think about "preventive extraction" meaning yank out the wisdom teeth even before they get a chance to erupt/get a chance to see the light of day.

Isn't that ridiculous?! In my opinion, wisdom teeth should be equal opportunity.