What would you do?

amyfelice · May 2011

I am as you know, a pediatrician. If you knew someone's DD (13 yo,niece of my BFF from home, only child), may have a genetic syndrome (called Marfan syndrome) that could be life threatening, but you felt totally uncomfortable telling the mom, what would you do? This child's family already has been challenged with some medical problems, and they get very emotional and upset about them. I can't think of any good way to do it, but I also know I couldn't forgive myself if anything happened to her! I'm agonizing over it, I can tell from her photos that she may have it. I told the GM (my BFF's mom) who tried to raise the issue at a doctor's appt she went to with the mom and daughter and the doctor said "she shows no signs of that disorder". Great! Totally untrue, now what? I mean she may not have it but to say she has no signs is crazy.

I really don't want to be all "up in her bizness" and I can't decide what to do. I have spoken to BFF but she's not all that helpful as she doesn't feel comfortable getting involved either. GM tried to help to no avail. I almost told her tonight, wrote a whole FB email and then erased it. I also feel like telling her in an email is just wrong, but we don't have a phone relationship, just FB and if we happen to see each other when I'm in town but it's been a couple of years. BTW this has been going on for a while.

serendipityRox · May 2011

Ooooo...that's so tough. I feel for you as I'm in a similar situation. I believe my niece has autism but can't bring myself to say it out loud to my SIL as I know she is TOTALLY in denial and it will permanently damage our relationship. I've hinted all around it, brought up the fact that since she's concerned something might be wrong (her words) that THAT alone is a red flag to go get it checked out, etc, but can't just come out with it.

I think that since you're a pedi you actually CAN say something. I would mention that "I was just reading an article for work and..." Somehow link it to work, making it less like a judgement (not that it is) and more like an FYI.

GL! It's such a hard place to be in.

jsugrin · May 2011

Arggg so hard. I was already to write out a response and then I read the bit about the girls Pedi. Frankly, with the mom wanting to put her head in the sand and not dealing well with things and her pedi saying "nope, no way doesn't have it" I think that there is a god damn thing you can do. Totally sucks, I'm actually pretty familiar with Marfan's and understand your concerns about her long term health but at this point if you say something to the mom she's going to get all pissy and retreat on the foundation that her Pedi said no way so who are you do be saying her daughter looks funny (I'm assuming your basing your thoughts on physical presentation).

I'm so sorry that you are in this position.

NorcalLinds · May 2011

Since you are a Doctor, do you feel like you have a duty to say something? What is the worst case scenerio if you did say something to the mom? If I were you I would say something. If she dismissed you, so what. At least you did your part

alyssa7 · May 2011

If I were the mom, I would want to know. Even if you aren't correct, if you thought something was wrong as a pediatrician, I'd want you to tell me.

tri_bride05 · May 2011

NorcalLinds:

Since you are a Doctor, do you feel like you have a duty to say something? What is the worst case scenerio if you did say something to the mom? If I were you I would say something. If she dismissed you, so what. At least you did your part

I agree w/this.

tri_bride05 · May 2011

NorcalLinds:

Since you are a Doctor, do you feel like you have a duty to say something? What is the worst case scenerio if you did say something to the mom? If I were you I would say something. If she dismissed you, so what. At least you did your part

I agree w/this.

ZoeMay06 · May 2011

I'd want to know if it were my child. Even if I was in denial about it or resented the person who brought it up, as a parent I wouldn't be able to live with myself if my denial kept my child from receiving medical care that could improve their chances. I'd want to know as the child too, because at some point she may consider having children of her own. After a quick Wikipedia search on this syndrome, I'd especially want to know so I could be aware of the warning signs of something going wrong. And if you don't have a friendship with the mother, there's nothing to lose and at least you'll have done your part as pp said.

amyfelice · May 2011

Ok, I did it (in a long FB message) and she's not mad! It was an orthopedist that she went to for a scoliosis issue that said it was not a consideration, not her regular pediatrician, so she is talking to her pedi right now. BFF said I did good so I am happy at least that she is taking it well and just being concerned but not mad or freaked out. Please send lots of dust her way that her daughter does not have Marfan Syndrome!!! And then once it is ruled out I won't have this burden hanging over me anymore, yay! Or if she does have it at least she won't die from it.

Fortunately we had chatted in the past about medication questions that she had for Nicole and stuff like that so it's not totally out of left field in a way for me to send her that message. I also left my phone number if she wants to talk more about it. Thanks everyone for your advice. I knew I had to say it but it was really hard.

Celyn · May 2011

If my child had a life threatened condition that should be monitored and family friend who is a pediatrician noticed it and never told me, I'd be totally pissed.

However, if it was already brought up to her pediatrician and he doesn't agree, I doubt you'll get much response from her. How sad for her daughter.

danandkelly · May 2011

Doesn't Marfan syndrome cause heart defects? could you maybe tell her to ask her pedi for a echo or something to "rule it out" maybe if you approach it as a just in case type scenario rather than an "I'm sure of it" approach.

If they are resistant, and have had medical issues in the past, they may be more open to the idea of tests to rule things out to be on the safe side, rather than someone else just giving a bad news dx. I'm sorry, that's a really bad position for you to be in.

ZoeMay06 · May 2011

amyfelice:
Ok, I did it (in a long FB message) and she's not mad! It was an orthopedist that she went to for a scoliosis issue that said it was not a consideration, not her regular pediatrician, so she is talking to her pedi right now. BFF said I did good so I am happy at least that she is taking it well and just being concerned but not mad or freaked out. Please send lots of dust her way that her daughter does not have Marfan Syndrome!!! And then once it is ruled out I won't have this burden hanging over me anymore, yay! Or if she does have it at least she won't die from it.
Fortunately we had chatted in the past about medication questions that she had for Nicole and stuff like that so it's not totally out of left field in a way for me to send her that message. I also left my phone number if she wants to talk more about it. Thanks everyone for your advice. I knew I had to say it but it was really hard.

So glad you did it, and that she took it well! I really think you did the right thing. Will you please keep us posted if you find out what happens from here?

tiki_t · May 2011

I would tell the mom that you recommend getting a second opinion to get the child checked out for that condition. Maybe make a recommendation to get the second opinion from someone you know in your field who knows a lot about the condition or specializes in it so that you get the most accurate opinion possible. After you say your peace, then drop it.Chances are that the mother wants the best treatment for her child and part of that is getting an accurate diagnosis.

amyfelice · May 2011

Yes, I know here well and she definitely wants what is best for her daughter. As I said, it was not her actual pedi who blew it off it was an orthopedist. Her pedi, whom she asked this morning about it, initially sort of minimized it, then called her back and said he looked it up and needs to do some further evaluation like measure her limbs, etc. L was very happy that the pedi was taking it more seriously. Also has an appt with another specialist for arthritis that she has had since she was little and the pedi told her to discuss with that doc as well. "Passing the buck" but not totally. I think it can be hard when you are used to seeing someone all the time to notice things like that, it is easier when you don't see the person all that often and then "bam! look at those arms!" you know?

I will definitely let you know how it goes, I hope it's negative and I'll feel like a big worry wart but N will be having one less issue to worry about.

f&s2006 · May 2011

I am so glad you told her and it went well.

I think I am also in the camp of, if someone I knew who was a friend and a ped suspected somethign and didn't say anything, I would be pretty sad about that.

Celyn · May 2011

Glad you did it and it was well received! Kudos to both of you.

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