{ Hello! }

My name is Gavin. I am 11 months old. I was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency that caused my liver to go into failure. I was misdiagnosed for 3 months and underwent emergency surgery before they found out what was wrong. I am on the Organ Donation List and am waiting for my "gift of life" so I can have a liver transplant. You can read about my story by clicking {here}. Thank you for visiting my online journal!

*It is our deepest sorrow to inform you that Gavin passed away while waiting to receive a liver transplant. He was only 14 days away from his 1st birthday. Please, if you haven't already, sign up to be a registered organ donor today and talk to your loved ones about your wishes: http://www.donatelife.net/. Thank you all so much for your love and support during this last year.

{ This is my family }

{ This is my family }

{ A Mother's Plea }

If you only read one thing on this website, let it be {this}.

Saturday, August 09, 2008

A Mother's Plea

Gavin has been hospitilized seven times in his short 10 months of life. He has gone through three surgeries. He has been in the ICU twice. We've had to race him to the E.R. in the middle of the night three times (why does it always happen at night?!). He already has 5 different scars on his small body.

The worst part is…this isn’t the worst. What we’ve gone through is only the tip of the iceburg. Some other families going through liver disease and transplant with their little ones have been through so much more. Shunts, draining, permanent hospitlization until transplant, extreme bleeding, banding...and that is all before a transplant is done. Afterwards there are worse possibilities. Our little man has a very long journey ahead of him, and I get weak just thinking about it. No child should have to suffer this way.

Why can’t they just transplant him now, while he is still relatively healthy? Why has he had to wait so long? Simply- there are not enough organ donors. I know a few children who have waited YEARS and still aren't transplanted. The sad, but harsh truth is that most of these little children must wait and wait and wait until they are knocking on death’s door before they will ever be transplanted. At Gavin's transplant center alone there are over 50 children waiting for a liver transplant right now. And they’ve only been able to do a handful of transplants so far this year. How many of those children left will make it to next year? How many more will be added to the list?

I understand fully why some chose not to be organ donors. I wasn’t one before all of this happened with my son. I admit, even as I signed up afterwards, I cringed. People don’t like to think about their death. They don't like to think about their bodies being excavated. But think about this way…most likely all of us will die “naturally” while we are old and wrinkly. So we wouldn’t be viable to donate our organs anyway. The very, very small chance that you would die young and healthy, and in such a way that you would be at the hospital in a position for them to even consider using your organs is so very small. Most likely it won’t happen.

But if it did…if there was some tragedy, there could be some small measure of comfort for your loved ones, knowing that life will go on for others. Almost every single religion out there, including the LDS faith (Mormons), is okay with organ donation. And in my opinion, people of our faith have an even bigger responsibility to be an organ donor, since most of us have never drank a drop of alcohol, never smoked, never tried drugs, never drank coffee. You can also choose which organs you are comfortable donating if you register through www.donatelife.net. And despite the sensational myths that get passed around…no doctor would even KNOW that you are an organ donor when you were brought into the ER for him to save your life. But if you are really that worried about it, don’t sign up through the DMV, so it wont be on your driver's license.

Or hey, if the idea of actually being a registered donor just freaks you out (and I do get that) then at least talk to your family about it. You can say, “if something were to happen, and the doctors are saying there is no hope, this might be something I would want to do.” And not that its any thing a parent wants to think about at ALL, but if you ever find yourself in this position with a child, watch this video, http://video.nbc5i.com/player/?id=278123 and hopefully you will at least think twice about it. Obviously baby donor organs are extremely scarce...thankfully for us, they can do split liver transplants where they take a portion of an adult liver so there is at least a better chance for Gavin and other children waiting for liver transplants. Parents of children waiting for different organs aren't that lucky.

One time while we were at the hospital, a mom came up to us to play with Gavin while we were waiting for the elevator. She tearfully (through a smile) told us she was taking her daughter home that day…on hospice, but that they were hoping to donate her organs “when the time came”. All I could do was cry with her and thank her for being so selfless.

But don't just assume that you wouldn't be a viable donor because of age or health or whatever. If the time came, the doctors can decide. At least give them a chance...give someone waiting a second chance at life. Give someone a miracle. Give a family hope and a new beginning. Why take these organs to the grave? They do no one any good there.

Why would I need to take my corneas with me, when they can give sight to two people who are blind? To give them the gift of being able to see the face of their child for the first time, or to see a sunrise over the mountains? Why would I need my heart when it could go on beating for someone else...a mother, a grandfather, a teenager? Why would I need my lungs when they could give the breath of life to someone else?

God gave humankind the ability to perform these surgeries. Each one is a MIRACLE. To take an organ from someone's body and place it in someone else's is amazing!!! If you want to see them being done, watch the documentary series "Hopkins" on ABC. Its one of the leading transplant centers in the US. You can watch all 6 parts of the series at ABC.com, click: http://abc.go.com/specials/hopkins/index. The stories are incredible...you will be addicted to the show once you start watching. I cried through them all.

If only .03% of the entire US population became organ donors, every man, woman, teenager, child and baby waiting on the entire list could be transplanted. That’s less than a third of 1%. Right now there are over 90,000 people waiting for an organ transplant, 16,000 for livers- 626 of them children. In a country of over 300 million people, these children must wait months, even years, while their condition worsens, and some even die.

I try to ignore these thoughts screaming from every corner of my mind as I speak to people in my daily life about Gavin's story. But you know what? I am scared that I am going to have to watch my baby’s body deteriorate. I am terrified that he may not last the wait, that his poor little body will be so ravaged by the time he gets to the top of the list, that he won’t be able to pull through the transplant. I am sick at the thought that I might have to explain to his older brother and sister why their baby brother won’t ever be coming home. I hate seeing him in pain. I hate the constant needles and hospital stays and medications and tubes and fears and having every molecule in my body trembling 24/7, and breaking down in tears at least once a day. I am exhausted.

And as scared as I am for what may come after his transplant, at least I know that with it he will have a fighting chance at life...because without a transplant he will die. He has so much strength and so much more living to do here on the Earth. I need him like the air I breathe. He is my sun, moon, and stars...my whole life. And every other parent with a child waiting on the list feels the same way about their own child. We all need this gift of life...the gift to raise our children, to see them without tubes and wires, to see them healthy and happy.

And so many others feel the same way about their mother or father who is waiting for an organ transplant. These children need their parents. Husbands need their wives, wives need their husbands. Families should not be broken apart like this when MIRACLES can happen. How many diseases are there where there is NO hope? No solution? No cure? To have people die while waiting, when they could have been saved but for others' selflessness is unacceptable in my book. We have the knowledge, the expertise to fix this...the doctors just need the organs to do it. If there is any way to save a life, it SHOULD be done. "Don't take your organs to heaven...heaven knows we need them here."

I know nothing I say can ever fully explain it…I wish I could crawl into your hearts and minds and show you, let you feel it. Maybe it won’t change anyone’s mind, but at least it will make you think twice. I just had to speak my mind- for him, for all of them.

If you are interested in more information on organ donation, you can go to the sites listed below, and click on the links at the bottom of the righthand column of this page, labled "News and Articles". Please take some time to discuss it with your loved ones tonight. Don't let misinformation or lack of information keep you from giving life. At least take the time to learn about it and find the truth. And if you read all of this...thank you.



official waiting list: http://www.unos.org/

register online: http://www.donatelife.net/

10 comments:

Rebecca said...

I linked this on my blog. I too think people should be organ donors. And blood donors. Hollis had a blood transfusion and if an organ could have saved him, I would have wanted it. We were going to do organ donation with him but couldn't. It's a long story. We think about you all the time, Bethany, and you guys are constantly in our prayers.

The Giffords said...

That was a beautiful plea. You all are in our prayers everyday.

Janell said...

If anything has the power to touch people's hearts about organ donation, this post does. I have tears streaming down my face here. I can't even imagine how you must feel every single day. Thank you for being so brave to share your story and your feelings.

This little boy who tragically and suddenly passed away was the son of an acquaintance of mine from college. His parents made the decision to donate his organs--a one year old girl got a liver, a 6 month old girl got a heart, and an adult got a kidney. He was a twin, and "shared everything" in life and in death.

I am pretty sure Jeff and I are both organ donors, but I will double check. My license doesn't say one way or the other? Thanks for the web site info. I will pass it on.

Melody B. said...

Well, you DID crawl into MY heart and mind...and let me feel it. I am BAWLING! I think I am already registered, but will double check to make sure. My soul aches and my heart breaks for your pain Beth. I wish God would have supplied us all with an emergency magic wand to heal the things that were almost unbearable. Some of life's trials are SO hard. I am jsut so sorry that you have been given more than you fair share. God must really trust you (and I know you're thinkin' "I just wish He wouldn't trust me SO much!"). You are amazing. Please let me know where I can help lift a burden!

Staci said...

Ok...yes I read it. Yes I agree with EVERYTHING you said! I have always SAID that I want to donate any organs to someone who may need them, but never officially registered...so I just went to the site. It took about 3 minutes...that is it...hopefully everyone takes 3 minutes & they might be able to save a life!

Bumm crew said...

I found your blog through a friend that has cancer and told us about your family.Thanks to your story and links, I am now on the registry. I never knew how many lives could be saved by one donor.

Peterson Fam said...

It sadens me so to see you and your family suffer and go through so much pain and heart ache. BUT what a strength and inspiration you are. You and Gavin know how to touch lives and educate and truely make a difference. What angels you are! You are such a heartfelt and tender writer...a talent I never knew you had. Every time I read your words and feel of your spirit, I am blown away and changed. I am one of the many that probably has never considered or thought about being an organ donor...I think just because of ignorance. And I can think of nothing better than to be able to help or save someones life when my life seems to be at it's end. Thanks for your plea. It has touched my families life and changed us for the better.

The Lindsey's said...

Thank you so much for this post Bethany. If I wasn't an organ donor already this would have convinced me for sure. Nothing can be as touching as a mothers plea for her child's health and well being. Thank you.

The House that James Built said...

From one alpah mom to another- thank you. this is my plea too. we are 24 days away from transplant (hopefully) just trying to find the right living donor. my heart is heavy for you. i'm glad you believe in eternal families and hope that knowledge brings you peace in your darkest moments. i will be linking this to my blog too and would love for others to be touched by baby gavin. i wonder how many babies you and gavin have saved with the awareness you have provided. i don't know you but i love you. may all the blessings of heaven be upon you cause God knows you deserve them. xoxo lizzie
liverforlulu.blogspot.com
thehousethatjamesbuilt.blogspot.com

Anonymous said...

You don't know me. I don't know you - but your mothers' plea touched me and I registered. I hope someday it will help someone to not go through the pain you've gone through. Good for you for not letting his life end in waste.