Back from U of M doctors visit

[Bigwilli]

Hi everyone,

I have not wrote in awhile so I'm catching up. We had 2 visits with a doctor we thought was a specialist who gave us 3 diiferent answers on what level Spina Bifida we were dealing with. At 1st it was mylomenengocile then menengocile then back to myelo again. He stated the lesion was also covered and there was no brain swelling which got us pumped up. This doctor then transferred us to U of M which we visited today. In a nutshell we felt we were given bad news. The lesion seems to be a myelo and open. Also the doctor feels the ventricels are 2x their normal size and is putting our child at about a 40% chance of being mentally handicapped. He says the ultrasound is not conclusive so we have an MRI next week to try and get a more conclusive answer.Me and my wife are holding strong with our faith and praying for the best. My question is anyone else had any experience with these type complications? Also I had a few random thoughts I would like all your thoughts on:


It kills me that Doctors see a baby as mere charts and equations and take the human factor out of dealing with people
Me and my wife do not wish abortion so do we really need to know all the bad things while we are awaiting the birth of our child? My thoughts are we get what we get and unless it compromises my wifes health and the fact interutero surgery can not be performed why be told these bad things? It seems like unneeded stress



Many thanks to Kali, Dodger, blessingsabound, Spookie for your support and comments. Hope all is well with everyone. More to come!

[kali]

hugsssss I have never understand why doctors only consintrate on the bad, especially since I dont believe in all those test they are putting your wife through. why? nothing really is known until the day your baby is born...then....nothing really matters anymore...once you hold your beautiful child in your arms. and yes he will be beautiful. it is all so unnecessary to be put through such stress...we are here if you need our support. when is the babys due date?

[Dodger67]

Hell that kind of quackery makes me want to hit something!:arrgh:
They are simply scaremongering.
They can't tell you with acceptable accuracy what that might be - so they might as well STFU!
No more tests! - unless the test will give you information that can be acted upon to make a real difference.
What is the point of knowing the exact size of the ventricles now when you can do nothing about it?:6775:
Please note that I'm not saying "ignorance is bliss". I am saying "pointless tests are torture".
You'll deal with whatever comes your way.

[Barb]

Could not agree more with Dodger. Until the baby is born, they cannot tell you for sure what you will be dealing with. C has some developmental disablilites but nothing that is overly life altering. Check out the link in my sig and you can see what a normal family that has one with spina bifida is surprising pretty 'normal'. C is the younger one with long hair. My older is a C too.

[Bigwilli]

Hi Dodger and Barb,


I did some research and it seems we are dealling with "lobar holoprosencephaly". Any of you heard of this? I'm floored and the chances of Spina Bifida occuring is like 1 in 1000 and this on top is like 1 in 10,000 and are baby got both. Anyways we are hanging in there and keeping faith. More to come on Thursday after the MRI

[Barb]

Please don't take this the wrong way, but did the doctors give you that term or did you find it by researching online?

The reason I ask is that the internet can truly be a horrible place to look up medical conditions.

[Bigwilli]

Hi Barb,

No harm. The doctors brought the term up and I researched it myself. The internet I feel has helped me quite a bit to educate myself as I feel my doctors are somewhat vague when they talk. I'm open to your view though as you seem to have more experience with this. When you say "horrible" can you clarify? I'm curious to what you have experienced so far.

[Barb]

I just mean that sometimes people go looking for a name for symptoms and that is a pretty dangerous thing to do. I know everytime I used to think something was wrong, I would find the worst possible information on it and scare myself silly. If you have a specific name, like you do, than research is a great thing. :)

[kali]

I agree with barb 100%

[angel]

I just mean that sometimes people go looking for a name for symptoms and that is a pretty dangerous thing to do. I know everytime I used to think something was wrong, I would find the worst possible information on it and scare myself silly. If you have a specific name, like you do, than research is a great thing. :)

I agree that the internet is good but can scare the crap out of you when looking up any medical condition. I have had to explain to my husband a thousand times this is what it COULD be not what it IS.

I know things are pretty overwhelming but you will get through it. I agree with dodger and everyone else. If the test isn't necessary then why put yourself through it. Keep that in mind when your child is born when they start throwing surgery options at you. I have only had 4 surgeries and i have myleo. Every time we went to clinic when i was a child they had another surgery they wanted to try. My mom didn't like the idea of putting me through and operation unless it was life or death or was going to dramatically improve my overall situation!! Some of the ideas were just insane and some of them were a "maybe this will make it slightly better" or maybe she will look more normal if we did this. My mom always said NO WAY!!! The flip side is what if it don't work, what if she goes through all that and comes out loosing something she already had working well enough. She agreed to 3 things, the spinal closure, the club foot correction (because it dramatically helped my mobility) and the spinal fusion. I had a c section when i had my son. Due to the spina bifida and due to the fact that i am just such a small person. Everything else we said no to. Use your judgment not anyone elses when it comes to your child. That is my advice.

Angel

[Bigwilli]

Hi guys,

We got good news this past week! Our baby doesn't suffer from lobar holoprosencephaly. The enlarged ventricles in the brain "masked" the ultrasound results making it appear like something bad was happening. The genetic counselor actually took the time to have someone with more experience review the results as she knew we we were pretty stressed out.

As a side note I prayed heavily last Sunday night for God to intervene and by Monday we got this news back! Thanks to all of you outh there who are paraying as well along with others who take time to send encouragement.

More to come...It's a roller coaster ride so far!

[kali]

I am relieved! so happy about your good news!

[smoop]

Hi there..
New to this group but thought I would share a little about my experience with Univ of Mi..

After having my routine U/S and finding out that our daughter had SB I was sent to the high risk center at U/M. They did the initial U/S then sat my and husband and I in a room with a group of people: genetic counselor, interns, and an OB. It was very bizarre having a ton of eyes on us as they informed us what we could expect. Anyway, they gave me a brochure about SB and showed me a chart listing what I could expect with our daughter. They told me she was L1 which meant she would not walk.

A few weeks later we met with Dr Muraszko (the NS) to ask her questions and such. She was incredible! She told us not to focus on the level just yet because we just wouldn't know until our daughter was born.

My daughter was born at 37 weeks at U/M. I could go on and on but the docs were wrong about a few things:
Analise is functioning around L3-L4 (and does walk w/long braces & walker). One of the docs was certain she had clubbed feet which was incorrect!

The bottom line is our daughter is doing great! She's only had one shunt (thank God), and she is simply the most amazing little girl (Ok..I'm a little biased). But hang in there and don't put too much weight on what they tell you during U/S.

God bless,
Renee

[Barb]

Great advice. Glad to hear your daughter is doing well.

[kidzrkool]

I was born 33 years ago before people lived very long with SB.My parents were told I could never do anything so put me in an institution and forget about me, they chose not too, I am alive with VP Shunt, walking with AFO"s, self cathing, driving and working every day, doc's are smart, but they don't know everything. Listen to their medical advice, get info then make your decision from the gut (heart, God) that's all you can do, your child will thank you for it later.

[lisawalker23]

I was born 33 years ago before people lived very long with SB.My parents were told I could never do anything so put me in an institution and forget about me, they chose not too, I am alive with VP Shunt, walking with AFO"s, self cathing, driving and working every day, doc's are smart, but they don't know everything. Listen to their medical advice, get info then make your decision from the gut (heart, God) that's all you can do, your child will thank you for it later.

hi my name is lisa walker im 22 years old and 20 weeks pregnant with my first child who has been diagnosed with sb ive spoke to doctors and a neurosurgons they told me the same because of my age ane past problems of mental health issues. my family are against me going through with this pregnancy but i feel they are wrong i know i can do this for my little girl, i understand how hard it will be but ive had a little bit of good news she will be able to walk but will need a wheelchair later in life, she will have server learning disabilitys how ever her speach wont be impaired she will be imcompantant through out her life. she will need opperations after opperations as she gets older, she will also be having a shunt fitted 48 hours after birth im not totaly sure what that is or means for her.
im just scared that later in life she will hate me for bringing her into this cruel world because shes differant but no matter what i wont see her that way i will always be there by her side when ever she needsme
she is expected by doc to live to her 40s maybe longer
i would like to keep in touch if ok to let u know my progress and for support and same for u if u like..??
take care from lisa walker from bristol my email address is tigg.er86@hotmail.co.uk
all the best x

[LisaJoy]

Lisa,

Don't be discouraged by the medical profession's pessimism. I'm here to tell you there is NO WAY they can know anything as specific as they are telling you. They are giving you a Worst Worst case scenario. They actually TOLD you that she would be learning disabled but her speech would not be impaired? They simply do not know that.

Hang on to optimism -- pay attention to the real life experiences represented on this site -- love your baby -- and be aggressive about seeking out every available resource to help both you and her.

Lisa, too!

[Dodger67]

I think its time some doctor got sued for spouting such total BULLSHIT!!!

There is no way in hell they could know so much detail and to tell you such distressing stuff is gross misconduct in my (not so humble) opinion!

[lisawalker23]

thanks for ur reply lisa, yes they told me she will have learning dissabiltys but her speach wont b impaired. somehow i feel as this is all my fault maybe if i didnt have my own problems then this wouldnt be happening to me!!
i couldnt believe it when my neurosurgeon told me that sb is genetic
i really like this site as it is helping me out a lot which really my parents should be doing
why is it so hard?

[lisawalker23]

Lisa,

Don't be discouraged by the medical profession's pessimism. I'm here to tell you there is NO WAY they can know anything as specific as they are telling you. They are giving you a Worst Worst case scenario. They actually TOLD you that she would be learning disabled but her speech would not be impaired? They simply do not know that.

Hang on to optimism -- pay attention to the real life experiences represented on this site -- love your baby -- and be aggressive about seeking out every available resource to help both you and her.

Lisa, too!

thank you for ur message i wrote one back but its half way down this page

[LisaJoy]

Please do not blame yourself. Most of the informational websites on SB state that 95% of all infants born with SB are born into families with no genetic history of the defect. There is some genetic component in some cases, just like folic acid deficiency is sometimes a factor. But for the most part, NO ONE knows the cause of SB. There's no point beating yourself up over it because there's probably nothing you could have done to prevent it. Furthermore, your energy would be better used to educate yourself about the condition and make the necessary preparations. Focus on the future! We are all pulling for you.

[kidzrkool]

Every experience is different, every child is different and all parents are different. No matter how your daughter functions in life, walking/wheelchair, verbal/ signing, etc, she is a gift from God, meant to be here to teach someone something and you will be given all the knowledge needed to raise your child the way she is supposed to be raised.

[kidzrkool]

I'd love to talk to anyone with questions, gripe sessions, questions about God or whatever is needed. kidzrkool@yahoo.com