A personal story of a 6-year-old’s experience of her mom’s sudden liver failure

Personal essay, podcast and courtesy photos by CARINA ANDREWS

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I awake to the shrill sound of the phone ringing and look over at my alarm clock covered in Barbie stickers. It’s 8:30 a.m., Wednesday, April 23, 2003. I wipe the sleep from my eyes and glance around my room until the sleepiness fades from my mind and I come back to reality. I get out of bed as the phone continues to ring and trip over toys and dirty clothes on the floor. I start to wonder why Mom hasn’t answered the phone yet, so I call out her name.

Dad calls every morning at the same time to check on us. He always asks how we are doing and if I’ve had breakfast. I have been staying home from kindergarten the past few days because I have the flu. Mom is home sick too. She went to the hospital two days ago because she didn’t feel well and her face had turned yellow. My brother spent the night with Grandma and Grandpa last night so they could take him to school. The phone rings again.

“Hello?” I ask, knowing it’s Dad on the other end.

“Hey honey. Where’s Mom?” he asks.

“She’s still sleeping I think, hold on.”

I stretch the coiled phone cord toward Mom’s room where she is laying sprawled across the bed. I shake her shoulder and call out her name but she doesn’t move or open her eyes. I yell out her name a few more times, progressively getting louder. Nothing.

“Mommy won’t wake up.”

“What do you mean?” Dad asks.

“She’s not moving. Is she okay Daddy?”

“I’m coming home. Do you know how to call 911?”

“I’m scared Daddy. Please come home fast.”

“Okay, I will be there soon. It’s going to be okay.”

I hang up the phone back in the living room and rush back to Mom. I shake her furiously as I start to cry. She doesn’t look dead, but she doesn’t look alive either. One of my tears falls on her cheek. I wipe it away.

Dad works 15 minutes from home, but the front door opens less than five minutes after our call ended and soon he is by my side yelling Mom’s name and trying to make her sit up.

I think he called 911 while he was driving because he starts talking about getting her ready for the paramedics. Mom doesn’t sleep in pajamas like I do, and Dad doesn’t want the paramedics to see her naked, so he asks me to pick her out some clothes. I grab a T-shirt and sweatpants thinking they will be the easiest to get her into.

Dad holds her up as I try to get her arms through the sleeves of the shirt. It reminds me of dressing my dolls, except a lot more difficult because of her size and my tear-blurred vision.

We just manage to get the clothes mostly on when I hear the sirens getting close. Soon the house is filled with people in uniforms towering over me.

A policeman tells me to sit in the living room so I’m out of the way. I’ve never spoken to a police officer before and his stern face scares me. As I sit down on the living room couch, I hear some men asking Dad if Mom is an addict. I don’t know what “addict” means so I listen closer. He tells them she is not on drugs but Dad seems frustrated and he’s crying. I’ve never seen Dad cry before. The policemen don’t seem to believe him because they start going through all the drawers and shelves in the house. With all the conversations going on in the house, it is becoming loud, and the policemen are making a mess. I think about how upset Mom would be if she saw them destroying the house. My head starts to spin from all the commotion and I remember how sick I feel.

I stand up to get some water from the kitchen, but the movement is too much for me and I vomit on the living room floor. One of the policemen who is making a mess of our house turns around and sees what I have done.

“Did your mom give you something?”

I don’t understand what he is asking me.

“Did your mom give you drugs?” he asks demandingly.

I tell him no, but they just start searching through our things more furiously.

I wish my brother was here to take care of me, or at least so I won’t feel so alone and afraid. He’s older than me. Even though we don’t get along most of the time, he makes me feel safe.

Grandpa walks through the front door and sits next to me rubbing my back. I can tell from the look on his face that he is very worried but is trying to hold in his emotions for me. He looks at me and gives me a half-hearted smile. I can hear commotion going on in the bedroom. They can’t figure out how to get the gurnie through the thin doorway. Luckily, my parents’ room has a sliding glass door which leads out to the backyard. As they roll Mom out the back, I follow them.

When we get around to the front of the house, I see that we have made quite a scene in the neighborhood. Emergency vehicles line the entire block and almost all of my neighbors are standing on their porches staring at Mom as they lift her into the back of the ambulance. Part of me feels embarrassed by the attention and that everyone is seeing me in my bright pink pajamas, but mostly I’m just hoping I’m not going to lose Mom.

— — —

At the hospital, Mom was diagnosed with sudden liver failure. A few days later, her doctor told my brother and I we should say our goodbyes because he didn’t know if she would survive. Because of all the medications they had her on, Mom didn’t remember who I was. She thought she had twin boys and that Reagan was president. She hallucinated pictures coming to life and said things that didn’t make any sense to me. I had to scrub my hands for a minute, put paper booties over my shoes, wear a gown and a mask over my mouth before I was even allowed to enter her room. She had tubes coming out of her face and arms connected to machines and IV bags. All I wanted to do was crawl up in her bed and hug her, but her doctors wouldn’t let me.

Family members from across the state came to visit Mom. Most of them brought her flowers, but they weren’t allowed in her sterile room. The nurses kept the flowers on their circulation desk where my mom could see them from her room. Slowly, her room filled with get well cards, colorful balloons and stuffed animals. They looked out of place in contrast to the white walls and floors.

We got news that a man in Alaska had passed away that Saturday, and he was a perfect match for Mom’s transplant. I remember being confused why we were so happy that someone had died because I didn’t understand that needed to happen for Mom to get a new liver.

Mom got a transplant four days after arriving at the hospital and it went as well as anyone could have hoped for. The surgery was long, but there weren’t any major complications. She spent the next couple months in the hospital recovering from the surgery. She had to learn how to walk again, learn about all the medications she had to take and when to take them, and heal from her incisions.

It hasn’t been smooth sailing from there. Mom has gone through three episodes of rejection since then and countless blood tests, biopsies and doctor’s appointments. She has to be careful not to get sick, because the slightest cold could send her back to the hospital. I’m careful to avoid her when I am feeling ill and I’m constantly checking in on her to make sure everything is alright with her health.

When she was diagnosed with sudden liver failure, I worried that my mom wouldn’t be there to meet my first boyfriend, see me graduate, get married or have kids. But, thanks to the man in Alaska who decided to be an organ donor before he died, Mom gets to see the rest of my life and live her own.

Even with all the pain, heartache, stress and the mountains of medications she has to take to stay alive, I couldn’t be more grateful for the past 15 years with her. She has taught me that every moment you get with someone is a gift and should never be taken for granted. She has taught me to value love and friendship above all else, because in the end, to love and be loved is the most important thing in life.