the back story

I wanted to share this essay that I wrote as a guest post last year as a way to update my new readers and give a summary of what happened with Matilda and why I advocate for donate life.

Summer of 2012 my husband and I, along with our two and a half year old son Parker, moved across the country. We had so much to look forward to but were most excited for the arrival of our second child. A girl to be named Matilda. Like most parents we had some worries, but never in a million years could we have imagined the amount of pain, heartbreak, and happiness that her arrival would bring.

Matilda was born on September 21st, 2012. She was perfect and healthy. We took her home, we ate chocolate cake, and we laughed and danced in the living room. Everything was how it should be. Until she started sleeping more, eating less, and throwing up after nursing. We took her to the ER when she was eight days old, which led to an ambulance ride to the nearest children’s hospital and a subsequent transfer to NYC. I was told my now nine-day-old baby was in critical condition with acute liver failure.

To this day, I have no idea what happened. I cannot comprehend how I went from holding the most beautiful healthy baby girl I had ever seen to watching her limp body wither away.Matilda was placed on the top of the transplant waiting list – she weighed 6 pounds and would need a whole liver from a baby of similar size. This broke my heart. I was naive and had never considered that babies need small organs.

The idea of a liver transplant honestly terrified me. The statistics for surviving such a surgery at Matilda’s weight and age did not encourage a hopeful outlook. I couldn’t imagine saying goodbye to Matilda at the door of an operating room and worse, not being by her side if she were to pass. I looked to previous neonatal liver transplant recipients for encouragement and to my faith for solace.

The days leading up to Matilda’s transplant were overwhelming. I remember feeling butterflies every time I looked at her. She was slipping away; we could see that. Complications continued to stack up and talk of removing Matilda from the waiting list grew closer by the minute. They warned us that she might not remain a viable candidate for much longer. We refused to lose hope and were determined to enjoy life by celebrating the time we had together. I made Matilda an owl costume for Halloween. She looked adorable.

Then November 2nd, Matilda’s six-week birthday, her match was found. It came from a two week old. When the transplant team came to us with the news, we felt confident. Our last hours with Matilda prior to the transplant were peaceful and beautiful. We held her hand, we read her stories, sang her songs, and prayed for comfort and strength. The transplant went better than anyone could have imagined. The surgeon said it was remarkable that she was still alive. Only 1% of her original liver was still functional when they removed it from her tiny body.

Every day, every moment that I hold Matilda close, kiss her cheeks, and make her laugh I am reminded that she is a gift. The moments that I have with her were conceived, nourished, and brought into this world by another family. A mother chose – in what I imagine to have been the saddest moment of her life – to bring light into my life through the gift of organ donation.

We were blessed, many are not. Please take a moment to consider registering yourself and your children to become organ donors and save lives in the wake of tragedy.”

Thank you to all my readers for all your kind words and support. Every Thursday I look back at a specific day in the hospital and account the emotions that I experienced as we waited for the generosity of a liver donation. If you are interested in registering yourself or your children to be an organ donor, click here for a registration map by state.

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