EP65: Baby Ezra’s Incredible Liver Transplant Story

On this episode of The Mommy Labor Nurse Podcast, I had the opportunity to talk to a fellow mom, Serena, about her little one’s incredible liver transplant story!

It’s a little different than some of our other birth stories, but I was so thrilled to have her come on and share her inspiring and miraculous story, and raise awareness about the power and importance of organ donation.

Serena reached out to me at the end of 2020, and I was instantly amazed by their journey. Let’s take a peek at some of the things we discuss:

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A synopsis of her TTC journey and birth story (3:10)

We kick off the episode by talking a little bit about Serena’s birth story. The bulk of this story is actually about the aftermath, but it made sense to set the stage a bit!

Here, you’ll hear Serena share a little about her long path to pregnancy. She had PCOS and was trying to conceive for nearly 3 years before getting pregnant with her sweet second baby Ezra.

Serena talked about how she did little to prepare for her first birth and knew she wanted to do things differently the second time around.

She made sure to prepare with some childbirth education and achieved her goal of natural, unmedicated birth!

When you tune in, you’ll hear a comparison to her first birth, too!

Shifting the conversation to baby Ezra, can you talk a little bit about what you noticed right after he was born? (6:23)

“As soon as he was born, they placed him on me. And I noticed he had a lot of, they looked like freckles, like very faded freckles all over him. And, so the nurses took him under the lamp just to get a better look. And they were definitely all very confused. They said that they looked like something called hemangiomas, which are kind of like a little benign tumor made up of a bunch of blood vessels. And usually, a baby can have a couple of them, but you just don’t see them all over the body very often,”

After he was checked over by a pediatrician, they declared that they were hemangiomas, but decided to do an ultrasound to get a better sense of what was going on.

They checked all of his major organs and found that he did have a few of them on his liver. From there they were referred to a series of specialists at a Children’s Hospital where they went for extensive scans at just four days old.

In this part of the episode, Serena also talks a bit about her feeding journey with Ezra and some of the challenges that come along with weight gain for a baby with liver issues.

Continuing our story, what happened after the testing that was done at four days old? (11:55)

At this point, the liver specialists recommended taking a watch-and-wait kind of approach. So, he would have his liver numbers tested every week. Then at around three weeks old, his liver numbers were very elevated and they decided to try him on medication to help shrink the hemangiomas on his liver.

This meant that Ezra had to be admitted to the hospital because they wanted to watch for potential negative side effects with this medication. He did tolerate the medication well, and it helped to shrink the hemangiomas on his body – but not on his liver.

So at this point, they weren’t even sure what was causing all of the liver stress. At two months he was admitted again for more extensive testing. You’ll hear Serena explain more about this and what was going on with his liver.

Ezra gave them their first big scare when he was around three months old (19:10)

“When he was three months old, we had our first big scare with him. He had just woken up from a nap. And I went to go pick him up and he was very, very sweaty. And he was so cold and lethargic. So, we went to the emergency room. And his temperature was 91 degrees, and his blood sugars were at 19. I think the typical blood sugar is 65 at that age, so he was extremely low. I mean, they were amazed that he hadn’t gone into a coma by the time,”

A similar situation happened just a few days later, and they went straight to the Children’s Hospital where Ezra’s liver specialists were. It was decided that he would need a liver transplant – but it would need to be at a hospital in Omaha, Nebraska three hours from where they live.

Hear Serena talk about the challenges of navigating this from a logistic standpoint, and why they needed to keep him in the hospital immediately after his transplant evaluation. He was moved to the very top of the transplant list, and the liver transplant need was very emergent (28:30).

She was told that he may not make it even a few days without a transplant. At this point, Ezra was exactly 5 months old.

Serena shares more about finding a donor for her son (31:49)

In this part of the episode Serena talks about the journey to finding a donor for their baby’s liver. Hear her amazing and inspiring words of gratitude towards her baby’s donor family,

“I knew that somewhere, somewhere in the country, we don’t know where they’re from, or we don’t know who our donor family is. We do know that it was a baby. But somewhere, there was a family who was getting their last moments with their child, who was, you know, saying all of their goodbyes, and you know, getting those last, those last kisses and hugs, and snuggles, and any moments, and I remember thinking and telling my husband, you know, these last moments that they are having with their child is going to give us so many first moments with ours.”

The details of Ezra’s transplant surgery and immediate recovery (38:32)

Serena shares some details about the surgery and immediate recovery, but luckily it all went pretty amazingly! He had a short bout of acute rejection, but they caught it early and he totally rocked it!

They haven’t had any issues with acute rejections since then, and at the time of airing had hit his one-year transplant anniversary and is doing great.

After they were discharged (41:10)

An interesting aspect of Ezra’s story is that his transplant happened right before COVID hit! Within a few weeks of being discharged in March of 2020, the COVID situation here in the US started to get very serious.

In Serena’s words, “We don’t even know what normal life looks like with an immunocompromised child.” Let alone life in a pandemic!

She talks a bit about that transition and the ways they protect him and their family from COVID-19.

What is life like for Ezra today? (43:55)

To finish up the episode, I asked Serena what life is like for Ezra today! He is 15 months at the time of this episode recording.

She explains that he does still go to the hospital weekly to have labs drawn, but that when he was discharged he was on 15 medications. Today he is only on six, which is amazing progress!

Beyond that, she says he acts like a totally normal one year old!

“He’s our little wild child. He loves to be daring and do lots of naughty things he’s not supposed to. He is just so full of life, and he’s so sweet. If you don’t see his scar on his belly, you would never know his story.”

Register to become a donor at Donate Life America

If this story inspired YOU to register as an organ donor, you can at Donate Life America. Serena shared that at the time of airing, there were 2000 children in need of a transplant and 25% of those are under five.

There’s a huge need for donation in people of all ages, and 18 people die on the transplant waitlist every day. You can make a difference!

About Serena

Serena is a stay-at-home-mom of two boys. After her son received a liver transplant at the age of 5 months old, Serena has been an active advocate for organ donation. She shares his story as a way to bring awareness to organ donation and to honor his selfless donor and their family. 

Connect with Serena

Serena decided she would like to share her Instagram account to connect with any other mamas who might be walking the same journey or anyone interested in learning more about organ donation.

Find her on Instagram:  @serenafellers