On HATING Biliary Atresia

I. Hate. Liver. Disease. I. Hate. Biliary. Atresia.

I learned, via email today, that another baby has been born with Biliary Atresia. A friend of my mother's knows this mom. I hope to know her soon, too. I cried at work, knowing what this mother is going through - what this BABY is going through.

The road through Biliary Atresia, liver disease, and transplant is so, so, so lonely. To feel like you're the ONLY ONE out there experiencing this mess is awful. I remember feeling so alone.

But I also remember not wanting to talk to ANYONE who could have ANY idea what this was like. I didn't want commiseration. I wanted my misery and loneliness. It felt good there. I could be ANGRY there.

I found an online support forum shortly after we returned home from Omaha, and I remember thinking, "I wish I had known about this sooner!" So sometime between diagnosis and coming home, apparently I got over my wanting to be alone issues.

To this mother, whether you read this or not: I'm here. I understand. I care. I am simply a phone call away. If you need me or want me, I am here. You are not alone, and you don't have to be. If you want to be alone - I understand that, too. I'm not going anywhere - so when you're ready to scream about how unfair this all is, I'm here.

Not Right

God gained another angel yesterday. A little boy, just two weeks shy of his first birthday, died of liver disease yesterday while waiting for his transplant.

So many people don't understand, and I get asked a specific question so often: WHY? Why, with all of the technological advances, are children waiting on the transplant list instead of doing living donor?

Many times, it's near to impossible to find a good match for your child. Can you imagine the stress of knowing your child needs a liver, and that no one in your family might be a match? Or that you are a match, but you can't donate because you're needed as the primary care giver? Yes, transplant teams will deny a person as the donor for that reason - and with GOOD reason for it.

So many children wait on the transplant list, getting sicker and sicker, especially because the list just doesn't work for some kids. The more a child weighs, the "healthier" they seem - regardless that two pounds of weight might be fluid accumulation (like in Anthony's case). Transplant teams apply for exception points, but sometimes they're denied. And sometimes those exception points mean the child is just so, so sick.

And let's not forget the fact that an infection will render the child unable to receive a transplant. While certain infections are coursing through the child's body, they CAN'T be transplanted. Their immune systems will be so stunted after the transplant that they will be unable to fight whatever infection they had before the transplant. This happened to Anthony - he had pneumonia and had to be inactivated on the list until he cleared it. That took a week, and in that time an offer for a liver came for him and had to be turned down.

There is a fine balance between being sick enough to warrant a transplant, and staying healthy enough to receive that transplant. This sweet child who died yesterday lost that balance. His body couldn't maintain that "just healthy enough" status.

I've been around long enough now in this liver world - but it never gets easier when a child dies. I feel the loss terribly. I try not to let it show on the outside because my family doesn't need to be affected by this. I just couldn't hold it in any more today.

Please consider signing up to be an organ donor. Please hug your children tight. Please pray for all of these families, who have known loss way too early.

Please: don't take your organs to heaven. Heaven knows we need them here.

Remembering Haley

Two years ago a sweet girl named Haley passed away. She was waiting for a liver transplant, and couldn't fight any more.

Please keep Haley's family in your prayers. Stacy wrote a beautiful tribute, if you want to read it.

If you aren't already, please consider becoming an organ donor. There are over 90,000 people waiting for a life-saving gift.

Beautiful Christmas Gift

Happy Fourth Liver Transplant Anniversary, Aiden . Lisa's post to Aiden is the most beautiful and heartfelt letter ever. Go read it. Go! Then, post a note in the guestbook! GO!

Too Many

Dillon and Jackson , two more precious angels in heaven. Sweet, beautiful boys whose lives were so short, but so meaningful.

Please, consider becoming an organ donor if you are not already. In my sidebar, there is a link to a website where you can sign up. But! It goes further than that. Tell your family, your loved ones, that you want to be a donor. For the most part, it would be left up to them if something tragic were to happen to you.

I remember asking my dad, one time before Anthony's transplant, how to pray that Anthony would get the life saving gift he so desperately needed. How should I pray that a mother would lose her child so mine could live? It seemed (rightly so!) so selfish of me to want my child to live while knowing that another child would have to die to save mine. What made MY child so special? His answer to me (this man is so wise) was that I not pray for another child to die, but that I pray that a family faced with that tough decision would make the choice to save another child's life. Well, it never came down to that for us, because Mark was able to be Anthony's donor, but this is a common question asked by parents at my online support group. This was the very same question asked by Jackson's mother just a week ago.

Anthony was Status 1A for a few days before his transplant. The criteria for Status 1A is usually such that the child is so sick that they take preference over every other child in a region. It usually means that quality of life can only be sustained for about a week or two. Status 1A was scary. You would walk into Anthony's PICU room and smell ammonia and think, "Good the cleaning crew has come through." Then you would realize that, no, that wasn't the cleaning crew. That was Anthony. When he cried, his tears were yellow. He mostly just laid in his bed, breathing hard, and sleeping.

Jackson was Status 1A for over 40 days.

Jackson's mom has been aching to hold her son. To let him know that she's there, fighting for him, and with him. She wrote that she told him it was OK to stop fighting if that's what he wanted to do. He's battled so much in his short life, and his body couldn't hold out any longer. Rest peacefully, sweet Jackson. So many people love you.

I Won't Forget

We miss you, Haley . Heaven must be a beautiful place with you in it.

Your mom has done many wonderful things in the year you've been gone. I know you've had a hand in it. The Haley Vincent Foundation has made great strides.

Keep singing from heaven; we're listening!

Angel Haley

Some of you may remember last October my very short post about Sweet Haley who passed away. Through their terrible grief, Haley's parents have begun a foundation in Haley's name. You will notice a button linking you to that site on my sidebar. Take a moment to go there, see what the foundation is all about, and see if you know someone who might be helped by this foundation. I am not soliciting funds for the organization here, but if you are able to donate I know the foundation could use your help.

Haley, in her short life, touched the lives of so many people...myself included. I have a CD of Haley singing. She wrote funny, powerful and beautiful songs about life with liver disease. If you'd like to hear some of her songs, the foundation website has a selection.

Poor Tanner!

Please keep our liver friend Tanner in your prayers. He had his transplant check up in St. Louis this week, and while he's fine liver-wise, he's been diagnosed with RSV , a respiratory infection that can be bad in preemies (he was/is one) and immune compromised patients.

Get well soon, Tanner!

Sad.

Heaven has gained another angel. Haley was called Home on Friday, October 1, 2005. Please keep this family in your thoughts and prayers.