National Donate Life Month: Ruby Jane’s story

Did you know that the month of April is organ donor awareness month, or more formally called National Donate Life month. We have an incredibly moving story today of our friend and mama, Ani and her sweet baby Ruby. Hold your little ones extra tight today, and if you’re able, register to be an organ donor today!

A message from Ani:

Imagine holding your three month old child, and hearing the words, “Liver failure.” It was the worst day of my life to that point.I waited to hear the plan. I listened to hear what medications would cure her. I braced myself to hear the hefty cost of treatment. I even imagined the list of surgeries she would need, as a team of 15 or more people filled our hospital room one cool afternoon in April. I had been nursing Ruby when they walked in. They didn’t waste much time in sharing the diagnosis, and as it sounded more and more serious, I felt myself wanting to tuck Ruby deeper under my nursing cover. Only seconds before I had been looking into her eyes, dismissing the yellowish tint, while reminding myself, “Bad things don’t happen to good people.”

It didn’t take long to notice that most of the white coats in the room had the blue words, “Liver Transplant” embroidered under their names. They must have the wrong room. Transplant? As in an organ transplant? I listened, and learned, and felt my heart break into a million pieces as it was explained that our tiny daughter would need a liver transplant to make it to her first birthday. No cure? No medication? No treatments? She needs a liver transplant to survive. As a parent, it is our sole purpose to keep our children safe. It is our responsibility to provide what they don’t have. Looking at my sick daughter, and realizing that I was completely useless in making her better, was one of the darkest feelings I have ever felt.

Some comfort came when we learned we could be tested to be a living donor for her. That comfort was quickly replaced with anger and frustration, as myself, my husband, and a few others were tested, and all turned away as a matches. The small portion they would need from our livers, were each too large for her tiny body. She needed a child sized organ. So we waited. And waited. We waited mostly while in the hospital, our small family trying to stick together through the hardest of times.

We waited for a call. We waited for someone to come into our room, and say, “We found a donor! Someone is giving Ruby the gift of life!” We were waiting and praying for someone to make a hard choice, in an even harder situation. We didn’t know who they were, or what terrible events would leave them with the choice to donate their child’s organs to Ruby, but we prayed so hard for them in their grief, and that they would say “yes”.

We waited for 4 months, until Ruby’s little body grew too tired, and too sick to keep fighting. She passed away one week after she turned 7 months old. No one said, “yes”. No one was willing to donate to our sick, tired, and sweet daughter. There was a cure for Ruby. But we couldn’t pay for it. We couldn’t find it in a foreign land, tucked away in a tropical jungle. We couldn’t beg, borrow or steal for it. We couldn’t even ask for it! We just had to wait. Wait for a stranger to decide to say “yes”, and save our daughter’s life. I never imagined, even in my nightmares, that we would run out of time. I had so much hope.

The time to learn about organ donation is now. Making the choice to donate a loved ones organs needs to be made before being placed in the awful position to decide.
If we would be willing to accept an organ to save our life, shouldn’t we be also willing to give?

Read more about organ donation & Ani’s brave crusade for organ donation here.

Comments

  1. Calleen:
    on April 2, 2013 at 10:32 am said:

    Wow that was so incredibly tender!! The faith and courage of that sweet family is amazing! Having gone through the Donor process with my late husband (who was not in need of an organ, but was a donor himself) I am in full support of organ donations! And yes I am a donor. Thank you to those who give and blessings to those who receive.

  2. Caitlyn:
    on April 2, 2013 at 11:43 am said:

    Wow, what an incredible legacy that little babe has left behind!

  3. on April 2, 2013 at 11:46 am said:

    The Taylor family is such an inspiration to me! They are incredible people who have taken this challenge and made amazing things happen. I am so on board with organ donation and I admire their willingness to dedicate so much time and effort to the cause! Thanks for sharing!

  4. Alie:
    on April 2, 2013 at 3:51 pm said:

    Thank you so much for posting this! My husband and I are organ donors because of babies like Ruby.

    I gave birth to a baby last year with a fatal birth defect, and we did everything in our power to donate her organs. She (Amelia) lived just over 2 days, and we were able to donate her heart valves. It is a really neat experience to know that through her death, she has been able to help another infant live! xoxo

  5. Jennifer:
    on April 2, 2013 at 11:03 pm said:

    my daughter millie was diagnosed at 7weeks with a rare liver disease and was transplanted at 8months. she just turned 2 and is doing great. thank you so much for speaking out about organ donation! i HATE what led to you speaking out for this cause, but i am so grateful that you are turning it around to save others.

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