What can I do? (devastating news from a friend)

A good friend of mine just found out that her 8 month old daughter has Tay Sachs.

Her husband had genetic testing done before they TTC and it came back that he wasn't a carrier. Someone messed up big time!

Now they have a beautiful daughter who likely will not live past age 5.

I am just at a total loss of what to do. I know there's nothing I can really say or do to make this any easier... but if anyone has suggestions or ideas for me - I would love them.

I've just been giving my support, saying I'm here if she needs to talk..

She lives across the country if that makes a difference.

Thanks

Re: What can I do? (devastating news from a friend)

That is heartbreaking! I am so sorry for your friend, her family and baby girl!! I wish I had some ideas... Sending lots of prayers and hugs!

Re: What can I do? (devastating news from a friend)

I don't think there is really anything you can do but let them know you will be thinking of them and their daughter. This is so sad, I cannot imagine.

Re: What can I do? (devastating news from a friend)

It sounds like all you can do is be there for her. So sad!

Re: What can I do? (devastating news from a friend)

omg, how terrible. I just was looking online about this disease. How horribly unfair. I could not even imagine living every day knowing that my baby is on borrowed time

just be there for her and let her know she can talk to you if she needs to vent/cry/scream, etc

Re: What can I do? (devastating news from a friend)

Re: What can I do? (devastating news from a friend)

Posted by Mikismom


just be there for her and let her know she can talk to you if she needs to vent/cry/scream, etc

Re: What can I do? (devastating news from a friend)

how terrible


Just be there to talk. When you lose a child you feel so alone. Just let her know you are there for her.

Re: What can I do? (devastating news from a friend)

I am so sorry to hear this

There was a line in last week's ER episode that broke me:

When your parents die you are an orphan

When your spouse dies, you are a widow/widower

When your child dies - there are no words to now define me


I think being there for her and letting her talk about her feelings, anger, frustration, joys over her daughter and sadness over not having her future is the best thing you can really do. I know you feel helpless - it is wonderful of you to want to do something.

Re: What can I do? (devastating news from a friend)

Posted by dooodles

I am so sorry to hear this

There was a line in last week's ER episode that broke me:

When your parents die you are an orphan

When your spouse dies, you are a widow/widower

When your child dies - there are no words to now define me

Yes - this line makes me cry just reading it. Unfortunately there will be nothing you can do except to be there for her during this awful time. Ugh - I am crying now just writing this because it is every worst nightmare.

Lots of prayers for your friend and her DD. She's lucky to have such a great friend in you!

Message edited 11/17/2008 2:32:29 PM.

Re: What can I do? (devastating news from a friend)

All you can do is listen. I am so sorry for your friend- I am in tears thinking about her.

Re: What can I do? (devastating news from a friend)

Posted by dooodles

I am so sorry to hear this

There was a line in last week's ER episode that broke me:

When your parents die you are an orphan

When your spouse dies, you are a widow/widower

When your child dies - there are no words to now define me


I think being there for her and letting her talk about her feelings, anger, frustration, joys over her daughter and sadness over not having her future is the best thing you can really do. I know you feel helpless - it is wonderful of you to want to do something.

Re: What can I do? (devastating news from a friend)

I'd call her, often. I'd lead in the effort to be there remembering that she may not have the time or inclination to reciprocate your effort, and that's ok. I'd maybe buy her a portrait package for her birthday? Stay positive, of course, and go and see her if/when possible.

Re: What can I do? (devastating news from a friend)

OMG that is so sad I dont have any advice only to be there for her

Re: What can I do? (devastating news from a friend)

Re: What can I do? (devastating news from a friend)

I agree with everyone...be there for her and don't let a lack of response make you give up. They may shut down..may never ask for the help...but be vigilant with the offer.

A family member lost a child at 3 in a horrible car accident and to this day they say that there are no words to thank the people that came in and out of their home keeping it running. People brought food, took care of the kids...even little things like taking out the gargage constantly...all things that 20+ years they still remember. But during that time they had no idea...it was after when they asked "how did the garbage get taken out" so it was a really bad time and while they didn't realize that they needed help..it meant a lot that people took charge.

Re: What can I do? (devastating news from a friend)

Just be there for her. It is going to get bad, real bad. From what I have heard it is a terrible disease. I was tested before getting pregnant. Makes me want to be retested just in case .
I agree with the photo package as pp said. There are also companies you can order food from. If you have the money. Send them a meal periodically so she can spend more time with dd instead of cooking. Go and visit if funding allows so you can see the LO healthy before she starts to really deteriorate. It's just so sad

Re: What can I do? (devastating news from a friend)

How awful. I don't think you can offer anything more than your love and support. Maybe a card telling her so.

Re: What can I do? (devastating news from a friend)

I am so very sorry to hear that....

Im confused though as to why they didnt know earlier? It's part of the newborn screening....

Did your friend know that she was a carrier? Is the DH of Eastern European heritage?

The test is enzyme test is automated. Which is good in one respect and bad in others. The bad part is that it kind of acts like a screening test and there are false positives and false negatives. Usually if one parent is a carrier and the other parent is of Jewish descent they will order a different test...Unfortunately though something like 2/3rds of all babies born with Tay Sachs arent of Jewish ancestry..

There are a couple of diseases that are a lot like Tay Sachs but are actually different diseases. Im wondering if that's not what it is...The one that comes to mind is called Sandhoff

It really is such a shame..Im so very very sorry.

You really cant do anything except be there for her. Although I can say that it would be nice for her to have someone who knows what she is talking about when she tells you "whats up" with her DD. Maybe do some research on the disease..treatments...etc...