Shannon
Shannon Hickey inspired this ministry in 2002 when she decided to mark the 11th anniversary of her life-saving liver transplant by giving socks to the homeless. This page tells you a bit more about her remarkable life.
Shannon’s Story
Told by Kelly Lynch through Shannon’s Eyes
A healthy baby girl
I was born on June 21, 1990 as a healthy baby girl. My mother says it was one of the happiest days of her life. She was 22 and had always wanted to be a mother. When she counted my 10 fingers and 10 toes, she thanked God for giving her a healthy baby girl.
Devastating news
Within a few weeks, everything changed when the color of my skin began to turn yellow. Even the whites of my eyes were yellow. My mom took me to a doctor right away. The doctor told my mom that he thought something was wrong with my liver. I was 7 weeks old. A nurse came in and took some blood from my tiny little feet. My mom says that I cried, and that she cried too. She was so scared.
This was only the beginning. After more tests and bloodwork, the doctors told my mom that something was very wrong with my liver. They told her I had a disease called biliary atresia. My mom couldn’t even pronounce it and she had no idea what it meant. I was put in the hospital right away, and doctors and nurses wore masks when they came into my room. My mom said that she thought I was going to die. In fact, she had a priest come in right away to baptize me at the hospital.
Within a couple of days, I was sent to another hospital in New York City. There the doctors told my mom more about my disease. Biliary atresia is a disease which causes bile to back up into the liver and into the main bloodstream. It causes permanent liver damage, and the only hope for children born with this disease is a liver transplant. It happens in 1 out of every 25,000 births. It is not hereditary. And it can not be prevented. My mom cried and cried. She was devastated. She called Fr. Mychal Judge, a long-time family friend, who promised to pray for me.
In New York, I had a liver biopsy which confirmed biliary atresia. Just a couple of days later, I had my first surgery. I was 7 ½ weeks old. The surgery, called a Kasai procedure, if successful, would help bile flow from my liver. The doctors explained that it didn’t always work, and that if it didn’t, I would need a liver transplant. My family hoped and prayed. My mom says I came out of surgery with all kinds of tubes and wires. It was a hard day for my family.
I had to stay in the hospital for about a week before I could return home. My uncle visited with balloons and my aunt sent stuffed animals. And my Nana and Pop came to see me every day. In the weeks that followed, I had to return to New York several times for bloodwork and checkups. Sadly, my liver numbers, which were watched closely, weren’t improving at all, and my family began to accept that I was going to need a liver transplant. Doctors explained that without one, I would die.
My mother worried about me so much during those days. She wondered, Would I die? Would I get very sick? Would I get a liver in time? How sick would I be when I got one? Would I reject it? What would life be like for me? Would I live to see my first birthday? My second?
A glimmer of hope
Then, my Nana found out about an experimental program at the University of Chicago Hospitals, which would allow my mom to donate a portion of her own liver to me. As soon as my mom heard about this procedure, she knew it was right for us. And so she called the doctors in Chicago and set up an appointment for us to be evaluated. For the first time in weeks, my mom felt there was hope.
Days later, my doctor in New York confirmed that I was not getting any better. He told my mom that without a liver transplant, I would die before my second birthday. My mom cried and prayed, all the time begging God to let me live.
Because she wanted to make the best decision for me, my mom began educating herself. She began gathering statistics, literature and stories about children who’d been through transplants. She learned all about the options for me – a cadaver transplant, which meant receiving an organ from someone who had died, or this new procedure – the living donor transplant, which meant receiving a portion of a living adult’s liver. My mom learned that although cadaver transplants had good success rates, there was a shortage of donors. She also learned that often, children died waiting for organs to become available. My mom didn’t want me to die. My mom learned that the living donor transplant was new, that it was only being done in Chicago, and that she would have to put her life at risk to be my donor. If she chose the living donor transplant, I could have my surgery before I got too sick.
Meanwhile, I was getting sicker every day. My abdomen was so filled with fluid that it was almost the size of a basketball. And I was so yellow. My mom says I was almost green. I had no interest in eating, and my mom and Nana had to trick me to get me to eat. I vomited all the time. And I hardly slept. In fact, my mom says I slept in my baby swing in the living room every night. My abdomen was so full of fluid that I couldn’t lay down in the crib – I had to sleep sitting up, so the swing was perfect for me. My mom slept beside my every night on the couch. My mom knew that my liver had started to fail and that it was only a matter of time.
On December 15th of that year, my mom celebrated her 23rd birthday and we left for Chicago for a series of tests which would determine whether or not she and I were compatible with each other. If we were, my mom would be my living donor. She would give me a piece of her liver and a new chance at life. When we got to Chicago, my mom and I met Alyssa Smith, the country’s first living donor liver baby. Her mom, Teri, had donated a piece of her liver to Alyssa just one year earlier. When my mom saw Alyssa running and playing … and healthy and alive, she knew for sure that the living donor liver transplant was right for us. She finally felt at peace and had made her decision.
Wonderful news
One week later and just a few days before Christmas, my mom and I returned home with the wonderful news that we were compatible with each other. On January 29th, 1991, my mom would give me a piece of her liver and I would have a new chance at life. I would become the country’s 17th patient to receive a liver from a living donor.
Father Mychal’s blessing
She called Fr. Mychal as soon as we got home. She asked him to bless me before the surgery. He was a busy Franciscan priest but always made time for his friends, and he came to bless me right away. My family still cherishes that cold winter day when Fr. Mychal arrived in his Franciscan robe and sandals to pray with us. We all gathered in the living room, and my mom says he placed his hands over me, bowed his head, and asked for God’s blessings upon me. My Nana and Pop were there too, and they felt a sense of peace with his visit. My Pop says somehow he knew that God was going to take care of me and that I was going to be alright.
Christmas was special that year. My mom didn’t know if it would be my last Christmas with her. My Nana and Pop bought me a warm white fur coat to wear to the cold city of Chicago, and Santa brought me a new doll.
Getting sicker every day
Sadly, I was getting sicker every day, and just a week before my surgery date, I had an appointment with my pediatrician here at home. He told my mom that my liver had started to fail and he didn’t know if I could survive the flight to Chicago. I was having trouble breathing because of the excess fluid build up in my abdomen. My mom begged the doctor to do something. She knew we had to get to Chicago. The doctor gave me a medicine which would help drain the fluid from my abdomen, but he explained that it wouldn’t work for long. My mom packed quickly, and we boarded the next flight out to Chicago.
We arrived a week early, but the doctors and nurses were waiting for me. They put me in the hospital right away and spent a week preparing my little body for the surgery.
A new chance at life
At 5:00 a.m. on January 29th, my mother walked through the halls to my room to see me one last time before the transplant. She didn’t want to say “goodbye,” but she knew that if the surgery wasn’t a success that this might be the last time she saw me. She was scared but hopeful for my new chance at life. She kissed me, prayed over me, then left me with my Nana and Pop who stayed by my side every second.
Less than an hour later, my mom was wheeled into the hospital’s operating room number 9, where Chicago surgeons were preparing to perform the 17th living donor liver transplant in the United States.
“Tell me of a beautiful place,” the anesthesiologist told my mom as he began administering the anesthesia. “The Bahamas, on the sand and the beautiful water,” she told him, “I went there once …” She felt herself drifting off and said, “Just take care of my baby.”
At 9:00 that morning, I was wheeled into operating room number 10, where doctors were preparing to remove my diseased liver and replace it with the piece of liver they had just removed from my mother.
The surgery took all day. My Nana and Pop just sat and waited, hoped and prayed. My mom woke up first. She recalls the pain she was in and that her mouth was dry and it hurt to speak. But she whispered to the nurse who sat at her side wiping her lips with a cold rag.
“How’s my baby?” she asked.
Our surgeon was nearby and he came to check on my mom. He explained to her that the surgery was a success. He said that I was doing well and that with the liver I had, I would only have lived another couple of weeks. Thank God I got my new liver in time.
As they wheeled my mom into ICU, she heard my Nana yell out to her, “Shannon’s feet are pink!” They had just seen me and already noticed that the yellow color of my feet had changed to pink. The doctor explained that the new liver was working. After they transplanted it into my body, the blood flowed through it, it turned pink, and it worked!
My Pop took some instant pictures of me and brought them to my mom. She was so happy to see me alive and healthy! Then my Nana and Pop got to see me. They were relieved and overwhelmed with love when they saw me. I was in ICU with a big bandage around my belly and hooked up to more machines, tubes and wires than you could imagine … but my Nana told the nurses that she had to hold me. My Nana knew that I needed to be held and loved.
My mom and I spent the night in ICU – she was in the adult ICU and I was in the pediatric ICU. The next day, my Pop helped my mom into a wheelchair so she could come to see me. It was the first time we’d seen each other since the transplant. My mom says that moment was as happy for her as the day I was born.
My mom spent 8 days in the hospital, and I stayed a total of 4 weeks. We had some good days and bad days, and my family describes it like being on a roller coaster. In fact, I needed 3 more surgeries after my transplant. But I was never alone. My Nana never left my side during the day, and my Pop spent every night with me as my mom recovered from her own surgery. And Father Mychal called often, and prayed with my family over the phone. Sometimes late at night when the switchboard wouldn’t put calls through to the rooms, the nurse would come in and whisper, “I have Fr. Mychal Judge on the phone.” He was always there for me and for my family.
Home at last
Once I got home, people everywhere wanted to hear my story. I even got to appear on the Geraldo Show and the Les Brown Show. As a toddler, I passed out organ donor cards to guests at the Meadowlands Race Track and the Philadelphia Race Track.
And through the years, I continued to thrive and grow – thanks in part to my Nana who took such good care of me while my mom had to work. I was surrounded by love, and I felt it. I celebrated birthday parties and holidays. I went to see CATS on Broadway, skated in Rockefeller Center, and even modeled in the Ronald McDonald House Fashion Show in Chicago. I sat on Santa’s lap at Christmas and hunted for Easter eggs in the Spring. I saw flowers bloom and heard birds sing. I learned to walk and talk and even to dance.
Visiting Father Mychal
When I was 2, I went to visit Fr. Mychal in New York City. Again, he blessed me and reminded my family that God would always watch over me.
A setback
When I was 7, I suffered a setback when I developed post transplant auto-immune hepatitis. It is rare, but my doctor in Chicago was able to diagnose it quickly. My family was worried and called Fr. Mychal right away. He reminded them to “stay in today” and “not to worry about tomorrow.” He promised to pray for me. I was put on a new medication, was hospitalized, and had to undergo several liver biopsies.
A tragic loss
When I was 11, I lost Father Mychal. He was there on September 11, 2001, and when people were rushing out of the Twin Towers, Fr. Mychal was rushing in. After administering last rites to a fallen firefighter, he was hit by debris and killed.
I lost my hero that day, and my life has not been the same without him.
That Fall, I was scheduled for another liver biopsy. My doctor gave me some medicine to make me sleepy before the procedure. When I woke up, I told my mom that during the biopsy, I was imagining Father Mychal at the head of my bed with angels surrounding me on both sides. That gave my mom peace. A few days later, the doctor called with the results. They were better than we had expected. The scarring in my liver seemed to have reversed itself, something almost unheard of. And … the doctor said my liver looked like the liver of a child who’d never even been transplanted.
A healthy young girl, enjoying life
Today, I have perfect liver function. I am a healthy young girl who enjoys life. I am a member of my church’s Youth Group and a Teen Rosary Group. I enjoy singing with my high school’s Concert Choir and along with my Clay Aiken CD’s. I enjoy spending time with my friends, shopping at the mall and sending instant messages to my friends late into the night.
And thanks to the message of unconditional love taught to me by a man I admire most, Fr. Mychal Judge, I am grateful and blessed to be called the Founder of Mychal’s Message.
Nana’s Letter
One Set of Footprints: A Grandmother Remembers Desperate Times
Written in December, 1994 by Sharon Hickey, Shannon’s Nana
Dear Shannon,
Only a grandparent can know the true feeling of love felt for a grandchild. There is nothing as special in my life as you. I feel a radiance of love when I look in your face. You were diagnosed with biliary atresia; it frightened me. I dreaded it; I hated it; I despised it. The more I learned about it, the more I feared it. This was real. You, a tiny child filled every inch of my being with love, were in real trouble. I felt helpless. I was so frustrated. How could I make everything okay? Shannon, I was filled with despair; how consuming it became. Blood tests, surgeries, IVs … desperate times. Bilirubin counts, doctors, hospital stays … desperate times. You were vomiting; getting sicker; your bilirubin numbers were so high … desperate times. Things were happening so fast. This was the worst of times. I had no hope. Nothing was working. The Kasai was a failure. Why, God? Shannon, I started to pray. I didn’t sleep at night so I could pray. I was afraid to stop. I loved you so much. I felt so helpless until I started to pray for you – for us. I stopped asking why. I began to be able to deal with one day at a time. Our dear friend, Father Mychal Judge, told me to “stay out of tomorrow.” “God hasn’t even created it,” he said, “take one day at a time – today!” You were tested and given permission to become the recipient of a living donor liver. Your mother would donate a portion of her liver in an effort to save your life. How wonderful, how hopeful. I would do it too, if your mom’s liver wasn’t accepted. We were doing something.
Things looked better. The despair was lifted from us. How wonderful to have hope again. You were getting very sick, though. You couldn’t eat. You vomited all the time. I was very frightened, but very hopeful, too. We – you, your mom and I – had a future. You would have birthdays and birthday parties. You’d go to school and you’d get married. I dreamed that I would dance at your wedding. We would celebrate your life, not dread your illness. Life with you is a celebration! You have taught me to cherish and embrace every moment. You have cemented our family, united us together. You have become my sunshine on a cloudy day. I used to ask God why. Now, I just thank Him for sending me such a precious gift. You gave me some grey hair and heart failure, but you have also given me some million dollar moments. You took me on the trip of a lifetime. Biliary atresia isn’t so frightening anymore. I will dance at your wedding. I love you so, that I wouldn’t change one thing about you.
I thank you, such a small child, for showing me your strength when I felt weak, your courage when I felt scared, and your trust when I felt hopeless. I am proud to have walked through this darkest storm at your side, but I know there was only one set of footprints, because God carried us most of the way!
I love you!
Nana
Nana’s Story
This is an excerpt from a letter written by Shannon’s Nana, Sharon Hickey, nominating Shannon for an award.
Shannon was born 14 years ago with biliary atresia, a disease which affects 1 in 25,000 babies born each year. This birth defect killed most of its recipients before 1990. Shannon’s mom researched her daughter’s disease and found doctors in Chicago that performed life-saving living donor liver transplantation. Shannon and Kelly were perfect candidates and the operation took place on January 29, 1991. Shannon was only 1 of 20 to be given a portion of her mother’s liver. There were many surgeries in Chicago that winter – infections, a bile leak, removal of the central line – but at last, we all could go home. The surgery was successful. Shannon’s new liver was growing and working, and Kelly recovered from the donation of the left lobe of her liver. These surgeries were new and paved the way for transplants of the future. My daughter Kelly and my granddaughter Shannon were so brave.
My husband and I stayed in Chicago that winter. We stayed in the University of Chicago Hospital room with 7-month old Shannon. We stayed at the Ronald McDonald House with other grandparents and parents having this surgery. We left our family and support network back in New Jersey. The telephone was our only connection to them and the outside world.
Father Mychal Judge called regularly, the Franciscan friar that had been our priest, pastor and friend for many years. He had come to New Jersey to bless us before we left on this incredible journey. He prayed with us at midnight on the telephone, slipping by the switchboard that closed to all calls at 10 p.m. He prayed for us in his St. Francis of Assisi home on West 31st Street in New York City. How wonderful to have such a great and holy man helping us through such a difficult time.
We celebrate January 29th every year as another birthday for Shannon. Parties, mass, gifts and celebrations always took place … until 9/11. Our friend Father Mychal, the New York City Fire Department Chaplain, was killed by falling debris while administering to a fallen firefighter. We were shocked and grieved the loss of our friend.
On January 29, 2002, Shannon asked for socks for the homeless instead of the usual transplant gifts. This was to honor Fr. Mychal’s memory. Mychal’s Message was born – founded by an 11 year old! On the web, http://www.mychalsmessage.org tells the story. Shannon’s story is the epitome of how “one can make a difference.” Mychal’s Message has collected and distributed to the homeless thousands of baby diapers, socks, underwear and undershirts, nearly 1,000 pair of new sneakers, hundreds of fleece blankets, winter coats, hats and gloves, as well as 10,000 items to stock a soup kitchen in Philadelphia.
I took care of Shannon after her transplant. Kelly was a single mom forced to stay at work to keep the precious insurance benefits Shannon needed to heal, recover, and live. I nurtured her. I fed her body, her soul and her mind. Her health was the most important thing in my life. We played. We napped. We ate green veggies. We went to church and thanked God for her good health.
I began taking Shannon to the library when she was 2 years old. We joined the children’s hour and heard stories weekly with groups of children her age. We purchased our library bag for our books. Reading to Shannon became an important part of my daily life. Faithful and hopeful about her future, but prepared to face the reality of her fragile health, I wanted to open up the whole world to her. When Shannon showed an interest in something new, we would explore the book shelves of the library until we found the right books. Some days we would bring home craft books to learn how to fold paper into beautiful shapes. Other days it would be books about mountains. Whatever she was interested in was okay with me. We just headed for the shelves of the Warren County Library.
I believe the introduction to the world through books has helped shape Shannon to be the special young lady she is today. She has overcome a serious health struggle, has learned that being different can be an asset, not a detriment, and has become a leader in her own right. Shannon’s strengths not only lie in her ability to overcome a life-threatening disease but in her ability to overcome prejudiced ideas about those homeless souls that Fr. Mychal loved so much.
Shannon heard “the Word” read from the pulpit every week. She learned how Jesus wanted us to live. She learned about Good Friday with its great sacrifice, Easter with its spirit and awakening, and that on Christmas morning we would have a “Happy Birthday, Jesus” cake to celebrate the day. Shannon heard the true message from our God which enabled her to help a soup kitchen, a bread line, and many homeless shelters. She has reached her town, her county, her state and the world around her. Shannon is an example to all who know her. She is a loving, incredible 14-year old.
Shannon has faced death, liver biopsies, hospitalizations, tests for rare liver disorders and surgeries – even the loss of her 14-year old friend this year to his battle with his transplant. But, she has also built sandcastles, made snowmen, been invited to meet President and Laura Bush, and has danced at homecoming. She is the inspiration to many.
Shannon is supported by her family and friends, the same network that supported her during her 2½ month stay in Chicago all those winters ago. The person missing was murdered on 9/11 at the World Trade Center, but his loving hand has guided Shannon since then. She has changed not only her little corner of Lancaster County but affected less fortunate folks in many places.
Mychal's Message 