My DH and I have been talking and were trying to think of anyway possible that something good could come out of our situation. The only thing we can think of is donating Pipers organs when her time comes. If we can do anything so keep another family from going through this, we will. It would be nice to know that Pipers tragedy could save the life of another child. We aren't sure if we would be able to do this through because of her disease. Does anyone know who I would contact to find out?

Mom to GGG triplets born 2/7/09 at 30wks, 1 day

Andi Elizabeth - 2 lbs, 9oz
Bella Ryan - 1 lb, 11 oz
Piper Kate - 3 lbs, 4oz - Diagnosed with Leighs Syndrome 01/2010. Passed away on 01/16/2011.

Belinda,

I saw you posted this on the main board as well, but I wanted to comment here.

Your doctors will know, but it may be that it can't be determined whether her organs are viable to transfer until the time comes (I don't know how her disease progresses, and if deteriorates organs the further along she is). And I think it would depend on where she passed away; if it was peacefully at home, then they couldn't be donated. If it were at the hospital, they could be more prepared for it.

I'm sorry you're going through this.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30.2 weeks

I am not really sure but I would think your doctor or maybe someone from the hospital social work department could help you. I really just want to say how very sorry I am that you are going through this. I will keep you, Piper and your family in my thoughts and prayers.

Dana

Jacob, Olivia, Benjamin
30 weeks 1 day

Belinda,

I have been following your story on the main board and I am simply heartbroken for you and your family. You are such a wonderful mama to be thinking of others at this point. Regarding organ donation, I would speak to your doctors as well as the social worker to make sure your wishes are known. I know that some people are afraid to let the doctor know for fear that they will not persue every course possible, but I know first hand that doctors will fight like hell for Piper all the way to the end.

I wanted to also make sure that you were aware of the Now I Lay Me Down To Sleep organization. They will come in and take professional photographs of Piper and your family when the end is near. It is a wonderful memory for me to have these pictures of Hunter.

This bereaved board is a fantastic resource for both you and your husband. I hope that you will lean on us for support. I honestly do not think that I would be here without these women.

Please feel free to email me at msmaine18@aol.com or find me on facebook...Karen Fisher Jacobson.

Sending prayers for strength your way.

Karen
Mom to Patrick, William, and our Angel Hunter
7-14-08