It's been a while since I've had an interview go up for #themomstrongproject, and I'm so excited to share this one with you. Mia is a 16 year-old girl who had an incredible impact on me when I worked for Make A Wish Foundation before nursing school. Her example of selfless love got me through a difficult time. She truly has a heart of gold. I know you'll love her and this story.
Tell me your story and when life began to change for you?
I was eleven years old at the time and was really athletic. I had just tested for my first-degree black belt and was playing in many soccer tournaments on the premier team. I was healthy, in-shape, and had never been very sick before in my life. Everything was good until that spring of 2011. It was then I started feeling flu-like symptoms coming on. I had a big soccer tournament coming up, and after two weeks of fighting this “flu bug,” I decided to go play anyways. During my tournament, my Dad began to notice something different. I seemed more tired and not my usual, energetic self. I came home and my sickness got worse. I stayed on the bathroom floor all day, and even a sip of water would send me throwing up immediately. Everything that went in, came right back out. My body was rejecting everything.
In my family, whenever one of us is sick, it’s kind of that “tuck your chin and get through it” mentality, where you just sleep by the toilet and pull through it. But this was getting so bad, we started thinking maybe I needed to get to the hospital where they could keep me hydrated better.
We ended up in the InstaCare, and they poked me nine times to try to get an IV started. I was so dehydrated, they were unable to get an IV in, and sent me directly to Primary Children’s Hospital ER where they immediately got one in. At this point I was in and out of consciousness. They started fluids, got some lab work, and decided to do an ECHO, which is basically an ultrasound for your heart. They checked my heart and realized I was shockingly in heart failure. What? Heart failure? It came to us completely as surprise. I had just been playing soccer the week before. How was I in heart failure?
They decided to do a quick procedure to try and get the heart to start pumping correctly again, and kept me overnight in the CICU. Still intubated the next day I went into cardiac arrest. My Mom and Dad were downstairs in the cafeteria when one of the attending doctors came running in, tears in his eyes, and said you need to come now. My dad stood outside the room watching and I know they had to have security come to help him, because he was having a really hard time. The doctors and nurses performed over 50 minutes of CPR.
A surgeon who just happens to be the father of one of my classmates was off that day but called in from home to help with the emergency. When he got there he saw my mom sitting near my room crying. He said, “What are you doing here?” My mom told him, “It’s Mia.” My mom said the look on his face when he ran into that room was filled with concern. They both knew what he needed to do to save my life.
I was put on ECMO, or extracorporeal life support. ECMO is designed to provide temporary support when other forms of conventional life support fail. It’s a machine that mechanically supports someone’s circulation and gas exchange, normally performed by the heart and lungs, thus giving those organs a chance to rest and recuperate. Usually patients don’t stay on it longer than a week. It’s strange because I don’t recollect anything from that time, except for tiny snippets of things: flashbulb memories. These flashbulb memories only last about 30 seconds, but they’re really vivid... like the smell of certain things, or some noises. But for most of this, I have no recollection.
The team, including my parents, decided that week that a heart transplant was the only chance for my survival. They didn’t know if I was brain-dead or not, and before I was able to qualify for the heart transplant list, they had a team come in to analyze and verify to see if I was a good candidate for a transplant or not. My dad always tells me this story... He says the team had come in to assess me and had asked me to squeeze their hand, but I never responded. They’d say, “Mia, can you squeeze my hand?” and I just lay there. My Dad was in the corner of the room watching in disbelief, and he knew this was something important for them to see. As the team was heading out the door, my Dad came up to my bedside and yelled in my ear, “Mia, squeeze my hand right now! This is your father. You need to squeeze my hand right now!” Apparently, I had opened my eyes, just for a split second, enough to connect with my Dad, and my hand squeezed his. This interaction was just enough to convince the team I was eligible for a transplant.
My doctors fought for me to be put at the top of the list. I received a heart in just three days, which in itself is a miracle: June 5, 2011. Normally, I know this process takes months to years for most people, and so I felt really lucky. Because my lungs were full of fluid and my kidneys were failing, they kept me intubated for a period of time not being able to move from my bed. I lost about 55-75% of my muscle mass. My thighs and my calves were smaller than my knees, and I couldn’t walk or move without help. I had been intubated for so long, I had to relearn how to talk and reuse my voice to project. I had to relearn how to swallow and eat. I had to relearn how to write.
After about two months, things started picking up, and going smoothly. I haven’t had a single problem since being fully recovered after my transplant. I haven’t even had to stay in the hospital since, which will be 6 years this June. I feel really lucky. Most all of my friends who were with me during that time in the hospital getting their heart transplants, have had problems with rejection or they’ve needed a lot of interventions after their transplants. My heart has been amazing. It’s incredible.
At eleven years old did you fully comprehend the seriousness of having a heart transplant?
I specifically remember waking up right after my transplant. I woke up intubated and couldn’t talk. I remember looking over and seeing my dad sitting next to me. He
smiled at me and said, “Do you know where you are?’ I shook my head no. He said, “You’re in the hospital.” I felt confused and almost numb. He told me I had received a heart transplant, and I still didn’t quite understand what that meant. I was confused at how I had gone from playing soccer to being in a hospital bed. I saw all the tubes sticking out of me, not being able to talk, and thinking, Where am I? Who am I? I had a hard time remembering who I was. He asked me, “Are you angry?” I remember nodding yes and thinking, Yes, I am very angry. I was stuck, I couldn’t move, I didn’t know where I was, or how long I had been there. It was all very bizarre.
How did your parents cope with everything that had happened?
My parents were really tough through it all. But I know it was really hard for them too. Both my mom and dad lost a bunch of weight, and I knew they were scared. But I think it also taught them to live in the moment.
How did you cope?
For a long time, I kind of milked the “why me” card. I was angry. I didn’t understand why that had to happen to me. I felt like I didn’t deserve having to go through that; having to learn how to walk again, when soccer had been my life before. It just wasn’t who I was supposed to be. For a long time, I would just cry. I kept thinking it was a mistake. It just wasn’t who I was.
I don’t think I was really able to overcome those feelings and move on, until I was able to walk again. It was when I walked again that I felt something different. Something like, I can do this. When I was crippled and totally incapable, I felt pathetic, hopeless, and dirty. Everything felt wrong. Once I had control of some of those things again, I had a chance to rethink everything through. After that switch happened, I became super observant and open. I became willing and wanting to live each day the most that I could.
Tell me about your donor?
My donor’s name was Mikey. Mikey was seven when he got hit by a truck crossing the road. Not a day goes by that I don’t think about how grateful I am to him. He has a super strong heart. He’s like my little soldier in there, beating for me; my guardian angel.
Tell me about when you got referred to Make-A-Wish Foundation?
They contacted me soon after I had been released from the hospital, and I got the coolest invitation in the mail. It was this beautiful, fold-out invitation with a huge swan on the front, and a gold key inside. I was invited to come to the “Wishing House” and submit my wish to “The Wishing Wizard.” Make-A-Wish Foundation is a nonprofit organization that grants wishes to children ages 2-18 years old with a
life-threatening illness. Each child has a chance to make a wish, or something they’ve dreamt about. They can choose to go somewhere, to meet someone, to have something, or to be something. I came to the Wishing House and had the opportunity to think about and make my wish. I kept thinking, What could I possibly wish for? It was such a big opportunity, and I couldn’t think of something that could live up to it. I thought, Maybe it would be cool to go to the Olympics? But it didn’t seem quite right. I ended up choosing to “be a marine biologist” because it was something I was really excited about at the time.
One night I was thinking everything over. I was thinking about my wish, and also about my donor family. I had this realization that I wanted to give them something. I know that no matter what I give to them in this lifetime, it will never be equivalent to what they gave me. But every little thing that I can do, and can give them, feels really nice inside; because anything feels like something.
After thinking it over, I knew what I wanted my wish to be. We called the Make-A-Wish office and told them we’d like to change my wish. I told them I wanted to give my wish away to Mikey’s family who gave me my heart. They had given me the opportunity to live and create more amazing memories, so I want to give them an opportunity to make some good memories too.
Mikey’s family ended up going to Disney World and having a really good time. I knew I was doing the right thing, and it ultimately came down to knowing that they were happy. This experience made me so aware of people and it has helped me connect with others who are going through something difficult.
What are you involved with now?
After my transplant, I continued to do martial arts for a few more years and got my second-degree black belt. I stopped playing soccer but started to dance. I truly rebuilt myself through dance and through Soo Bahk Do, a self-defense form of martial arts. Soo Bahk really taught me how to be strong, emotionally and physically. The community that came with it was incredible and they gave me nothing but so much love. My teacher Brian Corrales really helped me rebuild myself. He gave me a lot of tough love, even when I didn’t want to go anymore. There were a lot of times when I wanted to just lay down and accept that I was going to be crippled for the rest of my life, he always made me get back up. Even if I would yell and scream at him, he would tell me to keep going. I got so much stronger through Soo Bahk, physically and emotionally, but dance helped me grow as a person in all different ways. It allowed me to grow to be who I am now.
Contemporary and modern dance is my love. It’s like a life to me. Right now I am a part of Virginia Tanner’s “Tipping Point,” and that community is so supportive to me. They are truly my best friends and those teachers have followed me all the way through my ups and downs. For the last year or two, I’ve been focusing on growing as a dancer and I’ve actually just committed to the University of Utah’s dance program.
I am also pretty interested in going into movement therapy. I know how much my physical therapists helped me. Physical therapy isn’t just physical, but it’s also really emotional. When you have the ability to help someone physically and emotionally at the same time, it can be extremely impactful. Physical therapy could be anything... from Soo Bahk to typical therapy. But what I know is that by going through the physical pain, is where I grew emotionally as a person.
What do you feel like it means to be a woman of strength?
It was when I was most frustrated that I decided I was not going to have my transplant define me. If I would’ve just sat around and said, “Poor me,” and hung my head, then I would’ve allowed this thing that has happened to me, define who I was. But my transplant doesn’t define me. It doesn’t define who I am. There are so many other things that define me.
A strong woman, to me, is a woman who wakes up every morning with the intent to find her best self; to grow and to find her creativity, while enduring and persevering and knowing that the bad things that happen to her, don’t define her. Being strong means accepting what happens to you: living with it, coping with it, taking it in, learning how to live with it, and then releasing it and moving on. And while you’re taking in all these bad things that might be happening to you, you’re also taking in all these good things. You’re choosing to take priority in the good things, but you’re still accepting the bad. Because if you don’t accept the bad things, you can’t possibly grow in any way. A strong woman accepts the bad, while choosing the good. She gives the most she can to life. To me, that would define a strong woman.
Mia, thank you, for being a strong woman and for impacting my life in a beautiful way. I’m also grateful for that heart that beats inside you. Keep shining your light.
A note from Mia’s mother, Heidi:
This time in our life is and was very hard to comprehend, explain, and it’s still difficult to talk about. The ‘why us?’ or ‘why her?’ questions went through my head, while at the same time the ‘why does my daughter get to live and another child have to die?’ question will always be there. These are questions I will never have answers to, and I chose to only let them stay with me for a very short time. Having something like this happen to your child really makes you see things in life differently. The things you thought were a really “big deal” become trivial. The things I once thought were so important or created value, are not the same. I have a different perspective on life than I did before. Each day is a gift! I spend my days trying to create value and focus. We try to live each day in the present; individually, and as a family. This year will be 6 years post-transplant for Mia, and we are actually traveling this coming May as a family to meet Mikey’s mother, father, and siblings for the first time. I am excited for them to hear his little heart beating so strong in my daughter’s chest. The gift of life is the ultimate gift and we should live each day trying to honor that.
