[SisterBear]

I have been pondering this question for about 8 months now and still don't know how I feel. So, I'll ask here and please post your thoughts.

Do our adoption agencies hold any responsibility if a child comes home with a previously undiagnosed major medical issue?

I know we all sign away any rights we have regarding this very issue. But rights aside, do the agencies have any real responsibility?

What if the child is terminally ill? Should the agency reimburse the family for adoption costs, hold fundraisers to help with medical costs, offer to help financially with a future adoption, pay for counselling, etc.??? I know they don't HAVE to do anything but what SHOULD they do?

Not at all saying how I feel one way or the other because I don't know how I feel. In most cases, there is no way the agencies here in the U.S. could know if a child had an undiagnosed major medical issue. In our case, no one could have known. Just wondering what others feel.

[jeannecr]

For a rare condition that is not usually part of routine screening in that country, I don't think either the agency or attorney should be held responsible.

It sounds like you need some help/support--have you asked the local medical/social work folks about it? My heart goes out to you and your daughter.

[LJR1974]

Only if it was clear they knew something and did not disclose.

However, I do feel it would be a nice gesture if they helped out in some sort of way.

I myself found out about a genetic disorder in my own family about 3 years ago (it doesn't affect my health, only reproduction). We've since discovered it goes back at least as far as one of my great-grandparents, yet I was the first one diagnosed.

I guess what I'm saying is, there are so many health issues and family histories. It's almost like everybody has something.

ETA: the more I think about it, it would be very nice if they offered some counseling services or something. I don't know.

[annaguat]

Lana, your precious little Carmen's story makes me cry. I believe though, unless the agency was aware of anything and was suppressing information, the agency is not in any way responsible. Hugs, Anna

[mksilvermoon]

i have no real answers - morally i would imagine holding fundraisers for medical costs/donating towards medical costs - morally that would be the 'right' thing to do (not because they are responsible but because it just is the 'right' thing to do)

i have read your blog and wept for you and your family - you are all in my prayers

MK

[2nd time round]

I just was looking at any Carmen updates on your Webpage, and popped over and saw this. I am so sorry you are going through this. I always admire how strong you are. I think there are many children who come home with learning disabilities and one person on this forum had there child develp cancer, I found Blanca is legally blind in one eye after arriving home. I think your situation, being fatal, is different. I think most conditions are undiagnosed or develop after the children arrive home. I don't think the agency would do anything other than feel bad for you and your family. It's no different than if someone has a biological child that becomes fatally ill. I'm sure they would like to know, but not feel responsible financially in any respect. I think if the attorney or agency knew of a preexisting condition, that would call for a law suit. Anyway, know that I and many others here think of you and your family every day. I think you inspire a lot of people. Have you talked to your agency? Have you been able to find the birthmom, I know your were trying. Have a joyous Easter, and enjoy your beautiful daughters.

[drasusi]

It seems as though SOMEONE ought to be responsible, no? But unless the lawyer/agency/foster mom knew and withheld information, I don't think they are responsible for more than sympathy for the situation....any more than an OB would be responsible if they delivered a child who turned out to have Tay-Sachs.

I know for me, creating a family was a sacred process, and I was mightily disappointed at the lack of interest/follow-up from the agency and lawyer once we were home. I viewed them as an integral part of an intense and difficult process to create a family....and apparently we were just one more client to pay the bills.

You and your family are facing an amazingly difficult situation. I would curse my bad luck....did during a brief time for a couple days when we thought our son had a fatal disease a couple months after arriving home....but I never thought to expect anything from the agency at that time.

It's SOOOOO not fair. I'm truly sorry that you are facing this. Everything I've seen you post (even this honest exploration of complicated feelings) indicates that you are confronting an unthinkable situation with dignity and grace.

My prayers for peace and strength for you, your daughter, and your family....and that you find the support you need from us here and those around you.

[Amber76]

First, let me say that I admire your strength and courage through your battle.
Next, let me tell you a bit about what our agency has done for us since our sweet baby died before we could bring her home. They haven't given us any money back, and won't. However, the director herself has met with us and offered counseling of a fashion to us herself. She's done this a few times. She also said that any and everything we paid to them would be placed toward a future adoption if and when we are ready to try again. Since we never got to finalize, I know our situation is different, but I would think perhaps your agency could consider something like that if you decide you might want to pursue another adoption at some point in the future.

I will pray for your family and for your beautiful child. I know that the pain of losing a child is beyond measure and I can only imagine it is worse when that loss happens slowly over time. God bless you and your family!

[emsmom52806]

I am so sorry for your situation. The only way that I could think anyone would be responsible, would be to know that someone before you had adopted a child from this same bio mother (if she was the carrier), and that child was diagnosed with the disease and they knew somehow and didn't tell you. It's so difficult because if she had more than one child she could have used different attorneys and how would someone know? I think the agency should offer you counseling because it is the right thing to do but they wouldn't have to. Are there any support groups that you can utilize or maybe you are. Those folks having been through something simliar could probably offer alot of support.

[connorsmommy1999]

I probably dont have the popular opinion but....

while I dont think they are "responsible" (unless they knew something was going on and didnt disclose) I do think that they need to do SOMETHING. If it were MY agency I'd at least do fundraisers to help with medical costs and I'd reimburse the adoption expenses. I realize it would mean cutting into the profit of not only that one adoption but also other adoptions, but I'd do it anyway.

I think it's that "HAVE" and "SHOULD" thing: do they HAVE to? no. SHOULD they? absolutely. They SHOULD be doing everything and anything they can to help your family. fundraisers, helping with counseling....yes.

I look at it this way: your church and friends are helping in this way, right? then certainly the agency that helped bring your daughter here should be too.
and if they did then I'd definitley help the agency in the future by doing fundraisers to help others adopt, refer other families to them etc.

[BrandyHagz]

If the agency knew of the issue prior to referral and if the agency knew that the mother was a carrier (if it's a genetic disease) and they made the placement and never warned you of potential medical issues - then the agency WOULD be responsible. There is case law that supports it.

The difficulty lies in proving that the agency did know and moved forward anyway.

If you have contact with the birth mother and she communicates to you that she did disclose the incidence of this medical condition in her family to the agency/attorney, then you would have ‘standing’ – and would likely win a court case.

There was a recent (last five years or so) case involving a very large agency where this type of thing happened. The biological family made full disclosure, and the agency placed without disclosing the medical concerns.

When the family took the agency to court, the child was, I believe, 14 years of age. This child had been adopted at birth.

This family won damages.

As far as the court of moral judgment - yes it would be nice if the agency (who really plays a small role in Guatemalan adoptions for the most part) did something to help out.

I would wonder what type of ‘case’ you’d have against the Guatemalan Dr. who saw her regularly but never noted an issue.

I’m sorry that you’re going through this…I wish your agency were stepping up.

[KJones5]

I'm guessing that the agency feels really bad about this and just doesn't know what to do. I'm guessing they avoid you as they don't know what to say or what to do as they probably feel on some level a sense of responsibility and/or fear some sort of legal action. So the easiest thing for them to do is bury their head in the sand. I don't know this for a fact (I don't even know who your agency is nor does it matter!) but it seems like it'd be a pretty typical human response.

However, the agency certainly has a relationship with a social worker and I would think at a minimum they'd have the social worker all over this supporting you however he/she can. Isn't that what social workers are trained to do -- support families and children???

You have been dealt a very difficult hand. You are a much stronger person that I am to be able to deal with this so gracefully.

[cjrogers]

Lana, it depends. Like others said, if they knew about something and did nothing - negligence can be proven then you can take action against them. If there is something that was downright obvious and they turned a blind eye, that can be considered negligence as well.

You pay for regular check ups with a physician. The physician *should* be running all general checks, including neuro, respiratory, musculoskeletal, general milestones and bloodwork. It would be extraordinary for specialists to see the child unless you or your facilitator request it.

What does your contract say?

Our friend, the one who was with us and came home with CP a few weeks ago placed their child in temporary custody with a foster family until the neuros can give a solid diagnosis. The agency IS paying for all of this because in this case, it was negligence. There were 14 signs and symptoms of CP and they were all disregarded - obvious signs that any FM, Facilitator would have noticed. And those signs were very much covered up in the monthly photos.

According to this agency's contract, if gross negligence can be proven, then the agency is responsible.

CJ

[drjeanne]

No, I don't think the agency should be responsible if there was no way they could know but, it would be really nice if they could offer to put the money you paid them for their services toward another adoption. One thing I wanted to mention is something our agency director always liked to DRILL into our heads when we were complaining during the adoption process.....she told us that out of the $30K (give or take) we spend on the adoption, that the agency only sees about $6,000 of that. Now, I don't know if that's right or if she was telling me the truth or not (Lord knows she didn't on a LOT of other occasions!!!) but, if it is true then they wouldn't be able to refund all your money because most of it would have gone to your lawyer(s) and facilitator, right?

Anyway, my prayers are with you as we approach Easter morning. May God keep you in the palm of His hand tonight. He is certainly using you as His tool! You are teaching so many people what it means to live a graceful and loving life! Thank you!

Jeanne

[TNR]

I am really not sure how I feel...i wll pray for you and your family. I am sorry you have to go through this.