Monday, February 10, 2014

Can We Get Serious For A Second?

So let's talk organ donation. I have never received an organ or even remotely needed one. No one in my family has either. I have always been kinda flippant about organ donation and a little weirded out by the concept, to be honest. Being as I had never really educated myself on it and didn't have any interest in doing so since it didn't affect me (the self-centered American way, I am afraid), it wasn't even on my radar. I mean, it didn't impact me so why should I care, right?

Until it did.

10 years ago this past December my cousin died. For my emotional sanity and the sake of sparing you the details, I will just say he was in his early 20s and loved by many.  I had gone to the hospital to visit him when a member of my family came out and asked if I wanted to go in to say goodbye. I was shocked because I was simply going up to visit and just that fast he was gone. I went in to see a shell of a man I once knew.  He was on a ventilator and his entire right side was impacted by neurological issues (maybe a stroke-that part is fuzzy now).  I talked softly to him while I massaged his feet and toes that were clenched and curled so tightly. His very pregnant wife came and hugged me and said they were waiting on the results of a second brain scan to confirm he was brain dead. I just kept talking, making jokes that he would have laughed at convinced he could hear me. I refused to wrap my brain around goodbye because death wasn't supposed to touch my life, his life, at such a young age.  We weren't done living so I just ignored it, as if I had to acknowledge it for it to be real. 

The doctor came in and brusquely told us he was, in fact, gone and asked if he was an organ donor. My heart started racing and I asked what felt like a million questions. His wife said he was, and in what seemed a blink of an eye I had to say a hasty goodbye and he was wheeled away to from me.  I was shattered inside and felt like they were adding insult to injury with his death and now they were going to take all his spare parts before they discarded him.  I share this as a raw admission, not to sound insensitive.

In the end, something made him incompatible with organ donation and his organs were not able to be used. But I was still hurt and angry. I made my husband take "organ donor" off his drivers license and stiffly said "no" when asked if I wanted it on mine. I never wanted my family to live through the scene I had just gone through nor would I do it again if I lost one of them.  

I didn't give organ donation any more thought. No need. It didn't affect me. It was easier to just pretend it didn't exist, a non-issue. I felt comfortable being able to say,"it doesn't effect me."

Until it did.

As most of you likely know, in August 2012 we had a beautiful daughter born with half a functioning heart (Hypoplastic Left Heart Syndrome, or HLHS), a congenital heart defect that has no cure.  The treatment for HLHS is a series of three open heart surgeries that allow for a longer life with a transplant being an eventuality down the road.  A bandaid of sorts.

I understood I would have to reassess my issues with organ donation at some point but that would be a loooong way off.  I would just deal with it then.

We prepared for Teagan's first open heart surgery at just a few days old.  She quickly developed a blood infection called sepsis that could easily become fatal and surgery was postponed. 3 times she battled sepsis back to back and I realized I may have to reevaluate my thoughts on organ donation much sooner than I had planned. We were struggling to get her healthy enough to even make it to her first heart surgery and it was only a matter of time before her 5lb body and tiny heart would give out at the rate we were going. I feared the "T" word would be brought up daily. I couldn't go there, not yet. 

I prayed a lot. I drew close to God and asked more questions of Him than I could ever expect answers to. And I waited. Every day the doctors would say,"We just have to wait and see." Wait through the collapsed lungs, the endless attempts to get a PICC line, the all staff ventilator emergency, the blood clots and fluid issues. All the while I prayed her tiny walnut sized heart would hold out and ignored the transplant concept.

In the end, Teagan was in a position she had to have her surgery because her anatomy was changing to where she would die if we didn't (super simple explanation). She wasn't 100% going into the surgery but we had no choice. What was to be had to given to God and we trusted that wherever He led it would be for our good.  

Fast forward-Teagan got through her first heart surgery and plodded along til her second. It has been a year since that operation and she is now a firecracker who has surprised all of her doctors with how well she is doing. Our main concern now is simply getting her to gain enough weight so she can get the third surgery.  

But....a persistent thought has followed me....what if we ALL waiting until it applied to us? Wow. Sobering.

During the last two years I have watched other heart babies grow and thrive with the 3 stage surgery plan, I have seen way too many pass as a casualty to the very nature of HLHS, I have seen some get the gift of life in the shape of a new heart, and I have seen babies die waiting on their gift.  I have followed pages, become friends with other heart moms, cried through the challenges and setbacks, prayed hard for just a few more days and the possibility of a heart becoming available, and rejoiced when the gift of life does come.  

Turns out God has been working on me all along, through precious angels like Nolan, Sonny, and Caleb.  Some children have even gotten multiple organs transplanted at the same time like Julian and Athena. 

In that moment where I was angry and in denial with my cousin, when I thought it an atrocity that organ donation could be brought up when my heart had just been shattered, when I wanted to scream and claw against death and God.....another family who was walking in the very same shoes chose life for another child.  Someone, experiencing what I am convinced would be the very worst pain in this earthly life, saying goodbye to their child....chose to allow another child to live and spare those parents the same heartache.

I didn't get it then.  Maybe it was the way the doctor handled it (he was very insensitive), maybe it was because I didn't have time to process it, maybe I was spoiled and ignorant in my young age. I don't know. What I do know now is the beauty of such a selfless act and what it can bring to those who need it. I know now how horribly wrong I was and how little people understand organ donation and the need for more people to be donors.

Did you know:

-there are currently approximately 120,000 men, women, and children waiting for an organ transplant.

-roughly 1,851 of those are children.

-in 2012 there were 14,013 organ donors in a country with a population of over 300,000

-each donor can save up to 8 lives and can bless many others with tissue and eye donation as well

-18 die every day waiting for an organ transplant

It isn't hard to do the math. There are not enough organs for those who need them.  Please, if you haven't done so already, sign up to be an organ donor. Clearly let your family know your wishes and intentions, as none of us know when our journey here will end. 

And pray. Pray regularly for those who have lost loved ones, particularly children, and have made the single most selfless gift to extend the gift of life to another family in the midst of their intense loss. 

Without that sacrifice we wouldn't be blessed to watch Sonny being a big brother....

Or Nolan conquering the world with a smile....

<<<2.5 months before transplant:2 months after transplant>>>

Or Caleb being a living testimony to so many....

Signing up is super easy through and ensures that your wishes are known and honored, or you can register with your state DMV to be an organ donor. And SPREAD THE WORD!!!


  1. Hi, I found your post through Caleb's facebook page, and I just want to thank you for your very honest testimony. It takes a very big person to be open and honest, and organ donation is just one of those touchy subjects!
    God is faithful, always, and I will be praying for your precious little girl to stay healthy and to keep gaining weight. She has such a heartwarming smile. :)

    Kindest regards,

  2. Hello, I saw your post on Athena's page and I just wanted to say thank you for spreading the word about organ donation. I am 31 years old and have end stage renal failure (my kidneys no longer work) I go to dialysis 3 times a week for 4 hours to have my blood cleaned. I am on the waiting list for a kidney transplant but it is a very long list, a lot of people wait 5 to 10 years for a kidney transplant because so few people are donors. Most people don't realize what exactly organ donation can mean for the people on the list so they simply dont think about taking that extra step and becoming registered. So thank you for sharing your story every person who raises their voice for organ donation is saving lives.

  3. Wonderfully written! My husband received his heart transplant a year and one month ago at the age of 30, I didnt ever think about being a donor until he got sick and we found out he needed a transplant if he wanted to live, it was life shattering but a year and a month later he is thriving and back to his normal self. Thank you to all of the donors out there!

  4. I finished this post in tears. The gift of life is one that I have been an indirect beneficiary to. My mother received a kidney and a pancreas from a donor 20 years ago. A family grieving over the loss of their son, chose to share their son with my mother. Their loss allowed me to continue to have a mother. It allowed my dad to have more days with his wife. I was able to have my mother there as I walked down the aisle. She met her granddaughters....
    2 years ago, that kidney stopped working. It had afforded us nearly 2 extra decades with my mother. Because the transplant wait lists are so long, we knew she would not live long enough to receive another gift like she had 20 years ago.
    I was not a match for my mother, and neither was my dad, or my brother. My mother-in-law requested to be tested, and she was a PERFECT match. The mother of the man I had married 10 years before, the grandmother to our daughters was a PERFECT match. And so, one grandmother saved the other's life. Another gift continued the story. A daughter has her mother. Granddaughters have their grandmothers. A husband has his soulmate. It all started with the choice a grieving family made over 20 years ago.

  5. I received a Kidney Transplant on July 18, 1996. I am forever grateful to that family who donated to me through their grief. What a precious selfless gift it was and I have never forgotten. I am thankful your beautiful daughter is doing well and pray she continues to grow and thrive. Thank you for sharing your testimony and your change of heart so openly. God bless you.