The phrase "liver transplant" usually conjures up the image of a senior citizen, not an infant. However, just a few short days after giving birth to her daughter, Matilda, Kelly Smith discovered that her newborn was desperately in need of exactly that—a liver transplant. Smith, who had recently moved across the country away from her family, suddenly had to grapple with her daughter's diagnosis, navigate a complex healthcare system, and figure out what to tell her 2.5-year-old son, Parker.
Before she learned that her daughter needed a life-saving liver transplant, Smith, like many of us, had never really thought about organ donation. "Pediatric organ donation wasn't something that I had really ever considered," she confessed to MyDomaine. "But it turns out that, at any given moment, there are 1900 kids in the United States who are in need of life-saving transplants." In light of her experience, Smith founded the blog Cloudy Day Gray on the premise that "we all have cloudy days, but it's what you do with those cloudy days that defines who you are," she explained.
Ahead, the donate life advocate opens up about how she coped with her daughter's diagnosis, how she and her husband found the silver lining in an impossible situation, and why she's passionate about spreading awareness about pediatric organ donation.
On When She Knew Something Was Wrong
We had moved to upstate New York about a month before Matilda was born, so her birth wasn't exactly on my mind. I was more worried about navigating this big life shift with my family. We assumed that she was going to be born healthy and that the most difficult transition was going to be my son learning how to not be the center of our lives.
At first, Matilda seemed healthy and fine. When we got the okay from the doctors, we took her home from the hospital. But that first week of her life just felt so different from my son's. She wasn't eating well, and she was tired all the time. My son was the exact opposite; ravenous and awake all the time. It just felt different.
When she was 8 days old, I took her to the emergency room because I just knew something wasn't right. She hadn't eaten in a long time, and she kept projectile vomiting every time I did feed her. After a simple blood test, they discovered that she had jaundice, but it wasn't regular jaundice—it was liver failure.
On Grappling With Her Daughter's Diagnosis
The shock of hearing that Matilda had liver failure sunk in, but I didn't really comprehend it. I just thought, What do we do? How do we fix this? We were sent to a larger hospital in Syracuse for more testing. I remember the doctor sat my husband and I down and told us that he wanted to go over the numbers with us. Her numbers were off the chart bad. He told us that there was nothing they could do. She needed a liver transplant.
That night, they sent us to Mount Sinai in New York City where they ran even more tests. She had swelling in her brain and acute liver failure, so they put her on life support. They essentially told us, "She's not going to make it. There's not much we can do. She's so sick." That's something you never want to hear as a parent. That in and of itself was so hard, but I also kept thinking about the practicality of it all. How am I going to tell my 2.5-year-old son that he just had a baby sister and now she's not going to be there anymore? And what are we going to do with him? At first, we were assumed that we would be in the hospital for a week to be with her as she passed, so he went back to Montana, which is where we had moved from, to stay with our extended family.
I remember having these really beautiful conversations with my husband where we decided that, if this was going to be her life, if she was going to live for a week or however long, that we wanted to celebrate it. We wanted to show her as much love as we possibly could and treat her as if she were just our baby. We sat with her in the hospital, we sang to her, and we read to her. Days went by. She crashed a few times, and they had to resuscitate her, but she kept making it.
On Deciding to Go Through With the Surgery
The day before Matilda turned 6 weeks old, the surgeon told my husband and I that it looked like they may have a liver for her from a two-week-old who passed away in Missouri. The hospital sent their transplant team there that night to look at the liver and, if we gave the okay, they'd bring the liver back to do the transplant and, hopefully, save her. I don't think I'll ever forget that moment. It's such a life-changing thing. But we were terrified because they had been going over the survival rates with us and performing a transplant on a six-pound baby is not an easy thing to do. If anything went wrong, there wasn't going to be a second chance. They weren't going to have a third liver on-hand.
Leading up to that moment, my husband and I were worried that we'd be on different pages. We were worried that if we made the wrong decision and she didn't make it, that we would blame ourselves or that one of us would blame the other. We are both really thankful that we were on the same page that night and that we both felt in our hearts that it was the right thing to say yes and to allow them to do this liver transplant. She wasn't going to make it another day, everything was shutting down, her blood pressure was extremely low, she had a bloody nose that had lasted for over 24 hours and there was no way to stop it because the liver clots blood. So this was her last chance.
Thankfully, the surgery went really well. It can be a 12-hour long surgery, but they called us five hours in to tell us that it was going really well and that we'd have her back pretty soon. She survived against all odds. The surgeons told us that only 1% of her liver was still viable, so that reassured that it was possibly going to be her last day alive if we didn't go through with the surgery.
On Adjusting to Her Family's "New Normal"
I started breastfeeding Matilda when she was 4 months old. Before that, she'd only been fed through IVs, so this milestone was this big feat. By the time she was 5 months old, she seemed just like a regular baby. She was breastfeeding, she was learning how to sit up, she was doing well with all of her regular milestones.
The only thing that was different was that she was on a ton of medication—and that we had to keep her isolated. For the first three years of her life, we didn't take her out of the house, we didn't let her touch anything, and we didn't touch her without putting hand sanitizer on first. It took a lot of mental strength adjust to our new reality. We couldn't do the normal things that I thought were what made babies healthy—socializing them, exposing them to germs, those sorts of things. As it turns out, kids are super resilient.
Despite being isolated for the first three years of her life, she's now one of the most social children in her kindergarten class. Even though she's still on medication that compromises her immune system, she's a spitfire and a survivor. We're so thankful to have her every single day. She says the funniest things. She does the funniest things. She's this amazing reminder of what life can bring us even when it's unexpected.
On Finding the Silver Lining
From the outside, it's easy just to look and think, Oh, that's awful, or I'm so sorry for them, or, I'm glad that that's not me. But the reality of it is so complicated. When my husband and I look back at that time in our lives, we really see it as a beautiful time and a joyful time. And that's hard to explain, but we felt so much love and were given so much kindness.
We really focused on celebrating her life and just the joy of what we were experiencing—that kind of fed our outlook. There were times when we were in the hospital and we were laughing. Our daughter was there, on the table, on life support, not doing well, but we had these relationships with the doctors and the nurses and our relationship with each other, so we were able to truly laugh and to experience this sorrowful time in a joyful way, if that makes sense.
It was hard, but these were moments that were funny and moments that were really beautiful in a spiritual way. I felt like, if we felt good and if we felt hopeful, then she would feel that as well. Whereas, if we didn't have any hope or didn't feel like the outcome was going to be okay, then she would feel that as well. We really focused on how to change our outlook, and we've continued that mindset throughout our experience.
On Becoming an Advocate for Donate Life
When I was isolated for three years taking care of Matilda, I felt like I needed an outlet, so I started writing online and sharing her story on my blog, Cloudy Day Gray. Through the site, parents of kids who were on the transplant waiting list started contacting me. There isn't a whole lot of information about pediatric organ donation online, so when people searched for it, my website would come up. As these parents started coming to me via the internet, I saw the tragedy of the lack of awareness about pediatric organ donation.
So many parents emailed me to tell me that their son or daughter was on the waiting list and that they were really hoping to have an outcome like mine. I'd write to check in with them and all too often they'd tell me that they didn't get an organ in time, and it really broke my heart because there's a cure—all these kids need is an organ. There are plenty of organs available, but the way that the system works is that the parents who have a child pass away need to decide in that tragic moment to say yes to organ donation.
To get more involved, I reached out to the hospital Matilda was treated at to see what I could do to improve awareness. After doing a few campaigns with the hospital, the Donate Life organization in New York City (they've since rebranded so their name is LiveOn New York) reached out to me. In 2016, we created a campaign called Long Live Matilda, complete with ads in Times Square that said, "Long Live Matilda. She needed a liver transplant in 2012. In 2016, she just needs a nap."
It is a really powerful image because you would never have known that she was so near death. She just looks like a really cute little kid. The ad aired in Times Square and was on all of the NYC subways and in the subway stations. It was even in Playbills. It was everywhere, and it's continued to be a really big success, so last year they decided to bring that campaign to life. They came to our house and shot a commercial that really brought it to life and showed her playing and napping and just being a regular kid.
A few months ago, they had her do a commercial, which was super cute, with Governor Cuomo. They just made the registration in New York as simple as it can possibly be. Now, you can do it online, rather than at the DMV, and LiveOn New York has seen a significant increase in registrations since they started running it.
I'm always eager and excited to talk about pediatric organ donation and to help people understand what it is. I really believe that if people think about it and plan ahead of time, then that decision to say yes to organ donation in the moment of a tragedy will be a lot easier than if it's just sprung on you.
For the month of April (which is Donate Life Month), I'm encouraging people to share a post on Instagram using the hashtag #HowIDonateLife to open up the conversation about pediatric organ donation. The idea behind the hashtag is that there are 1900 kids in the United States right now who need an organ donation, and so I would like to collect at least 1900 photos to show support to those kids who are waiting right now.