Didn't need surgery after all....miss diagnsoised

[admin]

We adopted a 3 yr. old girl, therefore had very little medical history. Via a video she was diagnosis with bilaterial BPI. When we brought her here we did not know about EMG's, CT Scans or MRI's that would help confirm her condition. 2 months later we flew to Texas for her 1st surgery. We met the doctor at clinic and he strongly confirmed his previous (via video) diagnois as Obestricial bilaterial BPI and he would do the surgery on her right shoulder the next day and also said she would need 5 more surgeries. We were overwhelmed. We have a 4 year old boy and live in NC. So I asked about other doctors. Comments were made but then he said that another surgeon could do 3 of the 5. So after we came home I worked deligently to find a surgeon close to home and of a good reputation. I found one and at our first meeting he was not convinced that she had BPI, so he scheduled x-rays and CT scans of her shoulders to make sure she wasn't dislocated, an EMG to test the nerves in her arms and then an appointment with an Neurologist. All of these came out normal which is inconsistent with BPI. Our daughter has Arthrogryposis. It is a condition where there isn't a lot of room in the womb and the fetus in cramped and developes from severe to mild deformities to contractures that render the extremities almost functionless. The cause or causes are unknown. It is about 1 in 30,000 births. The joint capsules are thickened and contracted, and the muscles may be decreased or entirely absent. Most of you gave birth to your children so I would think it would be diagnosised at birth. However, in our situation, we didn't have that opportunity. Our daughter's needs are an agressive OT/PT for now. Her upper body is all (thanks be to God) is involved. Please parents make sure tests are done for those who have finally feel you have an answer or have done what we have done....adopted anyway. God bless and Merry Christmas

[marymom]

thats one heck uva story
and Im glad you shared -You have shown great intuition as an adoptive mother, GREAT! I love to hear stories where the maternal bonding is reflected - and I think above all-it was your primordial motherly instinct(and intelligence) that is reflected when you shared this story
thanks again
blessings of recovery for your very special child-Perhaps there will be more similarities with her issues and you will be back- I know you will be welcome-
I am glad you questioned the unspoken authority of the doctors and hospital institution,- altho I think the medical institution in this country is well intended,
many americans seem to accept it as an authority and delegate responsibility to it for their own health and I think that is scary- nice to hear you didnt

[TONI(NY)]

I do not want to make any one upset, that is not my intencions. But i want to worn you about the EMG results. My daughter had an EMG,MRI when she was 9 mo. old. The EMG was normal. and The MRI came out perfect showing no avulsions. The Dr we had in Buffalo,NY almost did not do the explortory surgery (primary).

The surgeon, told us that the results did not match our daughters physical apperance. My daughter had very little moment in her left arm.

The surgeon, decided to operate to find out what was wrong. I am glad he did and very grateful. My daughter had 2 severed nerves. C5, C6. They were not even connected. So nerve grafts were done. But if the surgeon only went by the EMG, MRI reports we would not of even known about her problem.

I am only saying to be careful about what the EMG, MRI's results. They are not always accerate.

LOL
Toni

[marymom]

that is a very good point-
...but seemingly the "re diagnosis" was supported by several specialists...
assumably? the spcific joint formation to the new diagnosis is visable and acertainable by scans?
I definately agree that EMGs and MRIs are not useful tools in diagnosis for BPIs tho-

[TNT1999]

Wow. What a story. I have never heard of Arthrogryposis before. Of course, you probably didn't either until recently. I am impressed by your thoroughness and intuition as a Mom, esp. of a baby who you did not give birth to. I can't imagine how it would be to adopt a child, esp. at 3 y.o. I suppose it's hard for me to imagine anyone else being able to have such great insight with my daughter (who's 2 yrs, 9 mos) as you do with your new daughter. I'm amazed that you were already told at this point that your daughter would need 5 more surgeries. I can understand you being overwhelmed. I suppose that while part of me would've liked to have known upfront how many surgeries Nicole would've needed, the other part of me is content with taking it one step at a time. I would like to put you at ease to know that TCH would've done an intra-operative EMG before doing any unnecessary repair work (although I'm glad that you were able to even avoid her going under anesthesia and having an incision made if it's not needed). I would like to second another poster's comments that sometimes the tests are not accurate in diagnosing BPI though. We had an MRI done that didn't indicate any problems and our former Ped. Neuro. led us to believe that Nicole didn't need surgery. Because of that, we were late in getting the primary surgery done at 10 1/2 months. We haven't had a CT scan done yet, but some drs. feel that those are most effective on children 5 yrs and older. I've also heard that EMGs (unless done intra-operatively) are not always accurate either. I'm not saying any of this to scare you or to discount what you've posted, but just to be sure you remember that while it's good that you've ?d up to this point that you keep questioning going forward. It's hard to write this b/c I don't want you to take offense, but I wish that I had read a message like this when we had Nicole's first MRI done.

I'd also like to encourage you to "stick around" here b/c as someone else brought out, you're likely to have similar issues and find support and therapy ideas here. In fact, if you go to the home page of this site and click on the Awareness 2001 section, you will find a lot of therapy ideas that might be appropriate and very helpful to you. I don't know what kind of support, if any, exists for Arthrogryposis since it is such a rare diagnosis. Often, people share alternative therapy ideas here too that I would think would also be helpful to your daughter (such as music therapy, yogatherapy, gymnastics, hippotherapy, etc.).

So, is there any kind of surgery that will help her? Or is there a "cure" to her condition? Does the dr. expect her to ever have a full recovery? Sorry for so many ?s, but you've posted about something I've never heard of before. Thanks. Just answer what you're comfortable with sharing.

BTW, just thought I'd share with you, you're right that since most parents here (although not all) have given birth to their babies with BPIs, not all were given diagnosis or accurate info. at birth. Likely, since BPIs are often an issue of medical malpractice, the diagnosis is sadly concealed from the parents or the diagnosis is revealed but with an unrealistically optimistic prognosis. So, don't feel alone in the lack of info. you started with. Many here can emphasize with you. Well, sorry this is so long. Again, welcome to the board and I hope we'll see you post more. Thanks for sharing your story. -Tina

[francine]

You've gotten some great answers. I just want to welcome you to the message board and wish you a Happy Holiday Season!!

Blessings to your little one,
francine

www.injurednewborn.com
www.injurednewborn.com/maia/homepage.html

[lizzyb]

Hi...

Sorry for butting in here...! I usually hang around the adult board...but I read about your daughter being diagnosed with Arthrogrysosis Multiplex Congenita and thought I would just let you know that there is a support group for people/parents of children with this condition, here in the U.K. Unfortunately, they are not on the internet yet, so only contactable by snail mail or fax. I haven't checked if the address I have is still current, as its so near Christmas, but I can let you have all the details I do have. Please feel free to email me;
BlcE@aol.com
Best wishes...Liz

[lizzyb]

Me again!

I've found a support group in the U.S; Their website is

http://sonnet1.sonnet.com/avenues/

hope that is more help than my last message!!!

Liz

[admin]

Another good site http://members.aol.com/amcchat/amcinfo.htm