How rare is osteogenesis imperfectia?

{Mod Note: Please read whole thread to understand why this is a legal issue}

It's a genetic disorder. It is not related to anything else, including abuse. Who is saying that it is?

Is it common for newborns with multiple unexplained broken bones who may have a rare disease be taken away because it is said to be child abuse? My baby girl has no brusing or any trama or internal damage, just broken bones, and many symptoms of the disease OI. :confused:

According to the oif.org web site --

Definition
Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A classification system of different types of OI is commonly used to help describe how severely a person with OI is affected. For example, a person may have just a few or as many as several hundred fractures in a lifetime.

Prevalence
While the number of people affected with OI in the United States is unknown, the best estimate suggests a minimum of 20,000 and possibly as many as 50,000.

The current U.S. population is 311,569,684.

Has there been physical abuse? Has there been an attempt to diagnose OI?

It is often, though not always, possible to diagnose OI based solely on clinical features. Clinical geneticists can also perform biochemical (collagen) or molecular (DNA) tests that can help confirm a diagnosis of OI in some situations. These tests generally require several weeks before results are known. Both the collagen biopsy test and DNA test are thought to detect almost 90% of all type I collagen mutations.

No abuse at all :( we don't know what is wrong with her

Because we have no explination of the broken bones she was taken off us and I don't know why because she may be sick :(

no abuse at all :( we dont know what is wrong with her
Have tests been done? Are you waiting on results?

What did CPS say?

They took blood and had it sent out but have yet to hear anything

I guess you'll have to wait for the test results.

CPS is only doing what they have to. Sadly they can't take your word for it. They have to find out what's going on, for your child's well being.

Every parent that's investigated by CPS says that there's no abuse. They can't just accept that and walk away. If they did then countless children would stay with their abusers.

Let the system do what needs to be done. Keep looking for answers, and keep proclaiming your innocence. Make sure the doctors know that these broken bones can't be explained by abuse, that there's something else going on. Talk to anyone that will listen.

Hopefully your baby will be back with you soon.

Good luck.

Right now I have no clue where my baby is, I'm not allowed to know

right now i have no clue where my baby is, im not allowed to know

I'm so sorry that you're going through this.

I wish we could give you advice on how to get your baby back now, and I can't even imagine how you feel. Just let the system do what it's meant to do. Keep telling them you're innocent, and keep pushing for tests to find out what's wrong. Don't let up on them. Get your baby back, fight! That's really all you can do.

I hope that she's back with you soon.

And of course at the new location, the child will continue to have the injury, which is not medical proof, but it is a relationship.

She needs to be in my arms not with a stranger :(

she needs to be in my arms not with a stranger :(

I completely understand. Sadly that's not going to happen until CPS figures out what's going on.

Like I said, the can't take your word for it. Try to put yourself in their shoes. If they believed every parent that swore they didn't abuse their child, even though the child has broken bones, then most kids would end up living with abuse.

They have to do their homework. They have to figure out what's going on before they can give her back to you.

All you can do is fight, keep telling them the truth, demand testing, and wait. That's the only option you have.

Can there be a civil case if my baby was taken off me because the state thought that I was abusing her, but in reality she has a rare bone disease?

she needs to be in my arms not with a stranger :(
I'm hoping whoever is caring for her is being super watchful of her and careful with her.

Since OI is usually genetic, do you know of anything like this in either parent's family?

Once the results come back and the doctors figure out what she has, she will be back in your arms. Are you gearing up for what's ahead of you with her brittle bone problem?

I know they are only doing their job, but even when she was kept in the hospital on close watch for days at a time, and heard the dr say she is sick they continue with their case :( its going to take time but if she has this disease, it may kill her and they are taking that time away that I need to be with her

Hello s:

If you can show that they acted negligently... But, if they didn't know about her illness, and it appears NONE of you knew that, then they're not responsible.

If he was abused while in their custody, that's another matter.

excon

I'm hoping whoever is caring for her is being super watchful of her and careful with her.

Since OI is usually genetic, do you know of anything like this in either parent's family?

Once the results come back and the doctors figure out what she has, she will be back in your arms. Are you gearing up for what's ahead of you with her brittle bone problem?

I know what the disease is, but I am not sure how to care for it or anything hands on yet. All I know is that defness runs in the family along with minor bone problems. All of this is on my mothers side of the family which I know nothing about :(

Hello s:

If you can show that they acted negligently... But, if they didn't know about her illness, and it appears NONE of you knew that, then they're not responsible.

If he was abused while in their custody, that's another matter.

excon

Well they know about everything because they were in the hospital with me when we were told about this, yet they are continuing with this case

Hello again, s:

Then you're going to need a real mean lawyer.

excon

Where do you live?
Maybe we can help you find legal help. Legal Aid, law schools, pro bono (free) legal help from a big law firm.
I met a mother once whose baby had a condition like you describe, and she had a tough time too. When I met her the infant had a cast on each arm and each leg.

I've merged your threads (yet again). Please do not keep starting new threads for follow-up. Use the Answer options to add follow-up.

I've merged your threads into the Family Law forum, because this appears to be more of a legal problem. Apparently your child has now been properly diagnosed. So the questions are whether CPS acted properly or not. I would suggest you consult an attorney. Many will offer a free consult and they can tell you whether you have a case or not.