I just found out a couple days ago that my 5 month old son has to have a liver transplant. He was diagnosed with a condition called biliary atresia. Is there anybody out there that has gone through this? I am looking for someone to talk to about this.
I haven't gone through this, but a friend form college did. She ended up giving her daughter part of her liver. Her daughter is 5 now. You can follow their story here: http://www.nataliebear.com/
First of all -I'm sorry you and your son have to go through this. I don't know anything about it, but I urge you to find a support group. Ask your local hospital and your son's doctors if they know of any to recommend or google things like "parent support groups for sick children"; "support groups for children organ transplants" -that kind of thing. You will meet and talk to people in roughly the same situation as you. I wish all of you the best!
When my little sister was 2 months old she was diagnosed with the same thing. She spent 13 months or so on the transplant list and finally got one when she was 15 months old. I actually just did a scrapbook for her for her 25th birthday about it.
My parents and I have plenty to share! If you'd like to talk, P.M. me, and I'd love to give you our contact #!
Hi, K.. So sorry to hear it. My daughter has had several heart surgeries, so I understand the fear of the future. Anyway, just wanted to refer you to a story that I happen to remember on the front page of the Chicago Sun-Times for last Friday, April 2nd. It's about twins who have the same condition as your boy. Maybe they can link you up with someone who could help. I'm sure everything will be good...There is a light at the end of the tunnel.
My thoughts and prayers are with you and your son.
My son also has biliary atresia. He was diagnosed when he was 6 weeks old and had the Ksai procedure done when he was 8 weeks old. Luckily, he has done pretty well. He recently was put in the hospital and we was told that his spleen was enlarged and a few other things was going on so he would need a transplant. It's not an easy thing to have to deal with, I know. I have spent many nights worrying and crying. If you need someone to talk to I am here.
R. L.
You're not alone K.. My family will be praying for your courage and your son's strength!
Just saw your post and wanted to say, sorry you have to go through this. I will keep you in my prayers! A.
Haven't had the experience of it being one of my sons, but I have experienced supporting my husband post-liver transplant (12 years), and now supporting him through needing a kidney transplant. There are lots of transplant organizations, and I am sure you can find one in your area. I would check with the hospital where his transplant would be done for resources available to you. All the best to you and your son.
Haven't got any answers but wanted to say that my heart goes out to you guys . . . God bless you both and good luck.
I found this when I googled pediatric liver transplantation:
stay strong, it will get better!
