How a Nurse Practitioner Helps Families Navigate Life with Congenital Heart Disease, With the Benefit of Lifelong Research
My connection to congenital heart disease (CHD) has been lifelong. Born in 1970, I was third of four children. My parents at the time were in the midst of growing a family, business and building our childhood home. They were also coping with a complex congenital heart defect with unclear prognosis. My brother, second in birth order and 25 months older than myself, was born a “blue baby” diagnosed postnatally. This means he had significant cyanotic congenital heart disease where many structures were not formed correctly and blood supply to the lungs was impacted.
On day of life #1, Greg was taken to Milwaukee Children’s Hospital for further treatment and observation. Dr. William Gallen, then chief of Pediatric Cardiology, took Greg on as a primary patient and was the first of many providers to care for him. When he was discharged, he was not expected to live beyond 2 years of age and surprised us all.
A general surgeon with thoracic surgery training, Dr. Glickglich performed a classic Blalock-Thomas-Taussig shunt for Greg three months before I was born. When Greg became progressively desaturated, Dr. Gallen recommended a “newer” Fontan procedure in 1985 at the Mayo Clinic in Rochester, Minnesota. It was performed by Dr. Puga, and Greg was cared for by Dr. Driscoll. Interestingly, three years after my brother was born, in 1971, the Fontan procedure was described by Dr. Francois Marie Fontan from Bordeaux, France.
Dr. Gallen followed Greg until his retirement in the late 1980s and then connected with Dr. Stuart Berger (now Director of Lurie Children’s Heart Center) and Dr. Frank Cetta. Throughout Greg’s lifetime, he required additional surgeries and interventions and never was lost to follow up. He graduated high school and college, used his skills professionally in the workforce, and supported an active growing family. Thanks to research and medical progress, my brother benefitted from the best clinical care possible to optimize his quality of life.
As Greg transitioned to adulthood, I began my nurse practitioner career in cardiology, and assisted in pioneering a now internationally-known Home Surveillance Monitoring (HMP) for interstage infants. The program supports families after discharge from the first newborn surgery until the time of their Glenn operation. Parents are expected to perform extra daily cares with their baby at home to help the infant’s cardiology team assess changes in the baby’s clinical status.
To this day, the meeting discussing the pros and cons of the idea of HMP with Dr. James Tweddell, Dr. Berger, and team is clearly etched in my mind. We were certainly on to something – since then, research has shown that close follow-up and daily monitoring of a baby’s saturations, weights and intake improves survival rates between heart surgeries.
I have relocated clinical practice from Milwaukee to Boston, and now Chicago for family reasons; however, my passion for quality cardiac care and HMP has never faded.
How Family-Centered Care Has Evolved Over the Years
Michelle and her mother Susan Romanesko were recently featured on an episode of Heart to Heart with Anna, a radio show that discusses congenital heart defect (CHD) issues to enrich, empower and educate the CHD community. Michelle and Susan discuss the advancements in family-centered care since her brother’s childhood, and Michelle’s contributions to the field.
Single Ventricle Care at Lurie Children’s
- Read about Lurie Children’s Interstage Home Monitoring Program, which is led by Michelle.>>
- Read about Lurie Children’s Single Ventricle Center of Excellence.>>
Research Articles About the Value of HMP
Home surveillance program prevents interstage mortality after the Norwood procedure. Ghanayem, Hoffman, Mussatto, et al. The Journal of Thoracic and Cardiovascular Surgery 2003: (126); 5, 1367-75.
Nutrition algorithms for infants with hypoplastic left heart syndrome; Birth through the first interstage period. Slicker, Hehir, Morsley, et al. Congenital Heart Disease 2013; (8); 2, 89-102.
Improvement in interstage survival in a national pediatric cardiology learning network. Anderson, Beekman, Kugler, et al. Circ Cardiovasc Qual Outcomes 2015; 1-8.
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