Saturday, November 11, 2006

Too Many

I've tried not to make this blog about Tanner's liver disease; I already have a whole website dedicated to that. I've tried to maintain the focus of this site on my children, the funny & cute things they do, motherhood and all it's joys, and my own personal feelings. But, the reality of it is that his liver disease is a part of who I am now.

When Tanner was first diagnosed with Biliary Atresia (BA), I found a group of online people who were going through the same thing. After all, BA is rare and only effects about 1 in 16,000 children. It was so comforting to find a group of people who had to deal with the same things we do - and to look towards the future for Tanner. This is where I even met Lisa & Laurie that I met up with in Florida this past August.

But with all the benefits of the online support group, there is a price. That price is becoming attached to these children. Attached to children with a potentially fatal liver disease - kids who have to undergo big surgeries as infants and possibly even liver transplants just to survive.

But you see, sometimes, that liver doesn't come in time. And, it hasn't come in time three times in the last two months. We've lost little Rani in Australia, Dillon in Chicago, and last night we lost Jackson in New York. It is difficult to explain the sorrow I have felt for these parents and these children. It is difficult to imagine that in the last two years since I've been online with this group, we've also lost Jayli, Ava, Haley, Romina, Carter, and Gracie. And, those are only a few of the ones that I recall tonight.

Jackson was only 6 months old when he also became very sick and desperately needed his transplant. His mother gave Jackson a second chance at life by giving him a piece of her liver. But, he developed post-transplant complications including a fungal infection. He needed a second liver. He was Status 1A on the transplant list - meaning he had top priority on any available liver - and he waited there for 40 days before he passed away last night.

Tanner waited for 21 days on the National Transplant list. He was top in the region for a liver based on his medical condition, and no offers came. We were also fortunate to be at a center that believes in living donors, and Tanner received 24% of his grandmother's liver before he became too sick to benefit from it. The exceptional skill of the surgeon is a testament to the fact that Tanner didn't have complications post-transplant. We are, actually, one of the "lucky ones".

The future holds so many promises. New medications for post-transplant children - and possibily even the ability to grow a human liver from cord blood. What a miracle that would be. But, the problem is that children, babies are dying. And, they are dying today.

What can you do to help? I encourage you to be an Organ Donor. Make sure it's marked on your driver's license, register online, and most importantly - tell your family. It may seem strange, but in the event that something would ever happen that would make you an eligible donor, many states still allow the family to decide whether or not to donate a loved ones organs. Even if that person has indicated that they wanted to make that gift, it is the family's choice.

There are many misconceptions about organ donation - many of them brought to us by our media. If you have questions regarding organ donation, please go here.

In early September, a little girl by the name of Jada Rose received a liver transplant in Utah. She received a deceased donor transplant, but prior to that, her grandmother and namesake had tried to donate to her. The center had told her that she was too old and couldn't donate - that lady made sure everyone in her family knew she wanted to be an organ donor. Last week (less than 2 months after her granddaughter's transplant), she fell down the stairs and suffered irreversible brain injury. Her organs were donated - and in a strange twist of fate, the liver went to Jada Rose's pediatirican's secretary's husband (ok - I know, it's a bit tough to follow there). This woman had prayed for Jada - even while her own husband was on the liver transplant waiting list. Letting your loved ones know your wishes makes a difference.

To Rani, Dillon, and Jackson: While your time here on earth was short, you touched many lives. May you be at peace and healthy. Your memory will live on in our hearts.

To their families: I am so sorry for your loss. Please know that your little ones will not be forgotten and that you are in our prayers.


Laurie said...

Isn't is amazing, how these families have touched us? I've written something, Angie has written something, Moreena has written something, you know Lisa will, and so will so many others.

I try, over and over, not to get attached. I can't help it. I love these children. I try to step back from the group, just so I can concentrate on school. But I find myself, at my breaks from class, running to a computer to see what "my kids" are up to.

A beautiful post, Stacy.

Tonya said...

This was a beautiful post Stacy.. It touched me so much and of course saddens me to actually stop and think about what is going on around us. And I know I have not been coming to your blog for a huge amount of time but I didn't even know this about Tanner..

Kim said...

This post broke my heart. I can't imagine having to rely on the kindness of others (and, in all reality, the death of others) to save my own child, to not be able to do anything for my child but sit and wait and pray. I am a big fan of organ donation and it is checked on my license and my family knows that I wish to donate should anything ever happen to me--but how do I register online? And is there a national living liver donor registry? I have registered with the Bone Marrow registry and wouldn't think twice about giving a piece of my liver to a baby who needed it. Point me in the direction if there is one.