More of a Person, Less of a Patient: Celebrating Laura on Congenital Heart Disease Awareness Day

February 14, 2024

More of a Person, Less of a Patient

Celebrating Laura on Congenital Heart Disease (CHD) Awareness Day

Laura lived an extraordinary life; one that was as wonderful as it was difficult. Laura was born with and lived her whole life of 14 1/2 years with a serious and life threatening heart condition. Laura touched hundreds of people when she was alive, and left behind a powerful legacy of love, creativity and courage. Paul and I also have a legacy of being Laura’s parents. Essentially our story is a love story, one of creating a happy home life for Laura and of advocating for her needs in the hospital and at school while providing her with a childhood that was as normal as possible.

Laura was thrust into a challenging world since the day she was born on July 13, 1986. She was also born into a loving world. Laura had a rough beginning. She lived a very uncomfortable first 4 1/2 months of suffering from congestive heart failure that was left undetected by an incompetent pediatrician who failed to listen carefully to her heart during each visit, missing the pronounced heart murmur characteristic of Congenital Heart Disease. This same pediatrician was judgmental toward me,  a new mother who handed him a list of concerning symptoms and was quickly dismissed as an overly  anxious mother.  Due to a gnawing feeling that something was terribly wrong after my concerns were ignored, I sought out a second opinion. The second pediatrician heard the loud murmur and noticed bodily fluid build up within minutes of his first examination, and sent us immediately to Children’s hospital to get help for our baby.  Laura’s diagnosis was a mouthful; Complicated Single Ventricle Congenital Heart Disease; the way it was told to us on December 5, 1986.  Laura was finally diagnosed with Congenital Heart Disease (CHD) at 4 1/2 months of age. We discovered that Laura had three chambers in her heart instead of four: 2 atriums and only one ventricle. We learned that Laura was “cyanotic,”a blue baby and that she was “dusky grey,” with darker skin coloring due to her heart condition; not the dark Italian skin color that Paul and I and our families thought it was.  

We later learned that best outcomes for children with CHD come from early detection. Due to this grave injustice of a missed diagnosis, Laura’s treatment was delayed, late for medical standards of the care of a cardiac baby born with single ventricle heart disease.  Laura lived as a newborn for over four months with an onslaught of blue blood mixing in with red blood, with blue blood winning out.  Her first surgery was at almost 5 months of age instead of within her first month of life, the usual trajectory. 

Laura would remain in different degrees of blue, or cyanotic and somewhat off track in her medical care, most likely due to a late diagnosis. Cyanosis is determined by blood tests and by using a fingertip pulse oximeter to check oxygen levels in the blood to determine one’s oxygen saturation levels, commonly referred to as an O2 Sat reading. The O2 Sats of a healthy person is usually between 97% and100%. When Laura’s health was at an optimum, her O2 Sat percentages were in the mid 80s when she was sitting or at rest, and in the 70s when walking or what is considered exertion. As Laura grew, and her heart began to work harder, her O2 Sats fell into the 70s at rest and dropped into the 60s with exertion.  Even after several surgeries in her lifetime, she always lived in different degrees of cyanosis, congestive heart failure, and with arrhythmias. 

Though Laura had a serious heart condition, we did not define her by her heart condition. We looked at Laura as a person first, and as a patient second. We encouraged others to treat Laura as more of a person, and less of a patient; in the hospital, at school and in the world. Laura was the most interesting person I knew. Maybe it was because of her exuberant personality or the way she always spoke the truth even if it was hard to hear. Laura’s honesty was both refreshing and enticing. She kept me and others hanging on her every word. Laura was playful and wise beyond her years. She could be extremely silly one minute, and in the next minute be speaking profound truths. Laura had a great sense of humor, laughing often and making others laugh. Laura told it like it was. If she was upset or angry she expressed it. If she was happy she would act exuberant. You always knew how she felt and where you stood with Laura. 

Laura drew people to her like a magnet. Laura was famous. She had a fan club of people who loved and admired her. There were hundreds of people in her life; doctors, nurses, teachers, occupational and physical therapists, social workers, reiki energy healers, blood and x-ray technicians, family, friends and neighbors. Perhaps the greatest allure of Laura was in her ability to be happy in spite of her physical limitations and challenges. She did not complain and seemed to take it all in stride. Most of the time Laura felt like she was the luckiest person alive. We in turn, felt like the luckiest parents in the world.  Laura gave love freely and received love with gratitude. She made people feel special, like a million bucks. Laura was everyone's friend when she was alive, and became everyone's angel after she died.  

Laura lived her life with boundless creativity. As a toddler, Laura developed a rich pretend world and used pretend play to cope with the trauma from her heart surgeries and the two devastating strokes she experienced before she was three years old. Laura was naturally joyful, and  always singing and performing at home and on the stage. Laura was a prolific writer. She wrote fiction stories, Squeaky Mary, Muffy and Floppy Series, A Gift for Karen, and many more. Laura wrote poems, plays, and stories about living with her heart condition and the hospitalizations. She wrote a guide for children on how to prepare for the hospital and how to speak up for what you need. Laura wrote about what it was like to live with her stroke impaired right hand, The Struggle. She wrote about a bad experience in the hospital of being mistreated, The Mean Nurse. Laura wrote about her pacemaker surgery and hospitalization when she was in 4th grade, The Pacemaker. She wrote a story about going to the hospital in the middle of the night by ambulance on a holiday, A Good Friday to Remember. 

When Laura was a teenager, she dealt with stuff that most people could never have imagined, let alone endured. She faced her own demise with every range of emotion possible and with humor, honesty, creativity, and courage beyond our greatest imaginations. Laura found her voice and used it to ask for what she needed and to set limits in her medical care. She guided her doctors, parents, friends, and family on how to help her through her most dire days, which helped us to help her.

Laura was our diamond, our purpose, our hero. If  Paul and I could have, we would have traded places with Laura so that she could have gotten better, grown up, and gone into the future of her dreams. Instead when Laura was 13 years old she went into a future riddled with hurdles, hardships, and medical mayhem with massive unknowns that led to her early death. 

As heart wrenching as it was, destiny had a different plan for Laura’s fate. We prayed desperately for Laura to be able to come along with us into our futures, but discovered you can’t change fate, even when everyone involved tries harder than humanly possible. By writing Laura’s stories, and posting them on Substack, I am taking Laura with me into the future and making her legacy immortal.

All children should be so blessed as to experience the depth of love, joy, and happiness that Laura had in her life. All parents should be blessed to have a son or daughter as wonderful as Laura. No child should ever suffer the way that Laura did. No child should have to face their own death head on at age 14.  Laura was supposed to grow up, fulfill her dreams, become a writer, a singer, a wife and a mother. If Laura were alive today, she would be writing her own blog on Substack and her own book about her own life.