Chronicles of Natalia: April 16, 2018

In honor of Donate Life month, we will be highlighting stories about organ donation all month long. Our hope in doing this will be to show the many faces of organ donation and raise awareness of the impact and importance.

Meet Natalia. She is almost 2 months post transplant and thriving. Here is her family's story as told by her mother, Elizabeth.

I read stories about Biliary Atresia diagnoses and I can’t help but think about how different our experience was and how grateful I am that we caught it in time. Our story starts like so many other BA babies…

Our daughter Natalia was born on September 1, 2017. From birth she was very jaundice however, we kept being told it would go away and we needed to “just let her sit in the sun!” Natalia’s bilirubin levels continued to rise so our pediatrician referred us to a Gastrointestinal specialist. We, alongside our GI specialist, ran all the required tests when BA is suspected and came to the conclusion that although there was some scarring/damage to Natalia’s liver, nothing seemed alarming. Imaging showed that bile was being processed out of the liver and stored in the gallbladder - something that doesn’t happen with Biliary Atresia. The specialist ruled out BA and other possible liver diseases and sent us home. End of story, right? Wrong.

A month later, Natalia began having pale colored stools. We called her GI specialist and he sent us to have blood work done. A week later his office called and told us to take Natalia to the hospital immediately as her blood work showed that her liver was failing. I thought, ‘Not possible. BA was ruled out!’ The next couple of days were a complete blur. We were told that Natalia needed a new liver to survive so we were life-flighted to a transplant center in a neighboring state.

Natalia’s team at the transplant hospital explained to us that they believed she had Biliary Atresia – despite all the tests a month prior telling us she didn’t. On December 28th, we agreed to perform exploratory surgery to confirm it was BA and if so, perform a Kasai procedure to hopefully delay or eliminate the need for Natalia to have a transplant.

The surgery confirmed our worst fears; Natalia had BA and the surgeons would need to complete the Kasai. Despite our best hopes, the Kasai procedure was deemed a failure. By January 4, 2018, Natalia was listed for a liver transplant. Because Natalia was still so sick, we would have to wait for her new liver in the hospital.

As soon as Natalia was listed, both my husband and I looked into being living donors. Both of us were tested and we were thrilled to discover that I was deemed a match to save our daughter’s life. Surgery was scheduled for March 8, 2018. We would remain inpatient until then.

On February 22, 2018 around 8 pm, our coordinator informed us that they had a liver for Natalia. Natalia was prepped and within an hour, carted to the OR. I was alone the first hour of Natalia’s surgery as my husband raced to the hospital. We waited in the OR waiting room for what seemed like forever.

We received updates throughout the night and finally around 9AM, almost 13 hours after saying goodbye to our daughter, we were finally able to see her. The first thing we noticed were the whites of her eyes. It was a miracle!

Despite our overwhelming joy that Natalia was doing well, we knew that another family was grieving. We were not told a lot about our donor, we only knew it was from a teenage boy. Our hearts broke for the family who had just lost their son. To this day, I cannot imagine the pain and grief they must have and continue to feel. However, their choice to donate their son’s organs saved me and my family from experiencing that same grief and for that we are eternally grateful. Natalia will continue to live because of the selfless actions of a family. She will live on in their son’s honor.

I don’t think I have ever cried as much as I have over the past 4+ months. They have been tears of sadness, fear and most recently, pure joy. I am literally watching my daughter grow right in front of my eyes. She’s close to rolling over, she can almost sit up by herself unassisted, and she has the greatest laugh. Watching her grow is a constant reminder that we would not be where we are today if it weren’t for organ donation. She gets to live, and my husband and I get to watch it happen.

You can follow Natalia and her story by following and 'liking' her Facebook page, Chronicles of Natalia