A True Warrior and a Force To be Reckoned With

By Jessica M. Schulte, RN, BSN
Clinical Nurse Educator at VMS BioMarketing

Not only is February National Heart Month, but also the month that we celebrate Valentine’s Day, a day filled with love, romance, chocolate and overpriced greeting cards. But for my brother in-law and sister-in-law, Gene and Jill Gallagher*, Valentine’s day has a deeper and more profound meaning. On February 14, 2017, the Gallaghers welcome their first son, Weston Eugene. But instead of experiencing the overwhelming happiness, excitement, and joy of holding their newborn son, Gene and Jill also experienced fear, angst and vulnerability that no parent should have to endure. Weston was born with a rare congenital heart defect and would require lifesaving open-heart surgery within 48 hours of being born.

Immediately after his birth, Weston was rushed to the neonatal intensive care unit (NICU) and within two hours, transported to another nearby hospital to undergo surgery. After multiple setbacks and nine days in the NICU on life-support, Weston was stable enough to undergo the 11-hour, lifesaving open-heart surgery. After spending 22 days in the NICU, the Gallagher’s were able to bring Weston home for the first time. Most of the parents’ time was spent snuggling with Weston and adapting to their new life. During the first 10 months of life, he underwent 4 diagnostic cardiac catheterization procedures and even have a second open-heart surgery.

According to the American Heart Association, in the United States alone more that 1.3 million people are living with a congenital heart defect (CHD) and roughly 1 out of every 100 infants born each year have a heart defect of some form. My nephew Weston is a true warrior and a force to be reckoned with. It is remarkable how his parents found the strength to stay positive during the tough times and remain calm when things didn’t go as planned.

Caregiver tips

When Gene and Jill Gallagher were given the shocking diagnosis of CHD, the primary focus was Weston’s health and wellbeing. Although often forgotten, the Gallaghers discussed the importance of healthcare providers (HCPs) providing support to the parents and/or caregivers of CHD patients. For any serious or chronic illness, it is important to address the concerns of parents and/or caregivers. Below are some helpful tips for HCPs from a caregiver perspective.

  1. Upon diagnosis, families need as much education possible and as early as possible. Parents and caregivers will feel empowered when they are knowledgeable about their loved one’s diagnosis and will feel more confident when important healthcare decisions need to be made.
  2. Caregivers will want to be active participants in the care of their loved one, especially a child. Ask to participate in meetings and discussions regarding the treatment journey.
  3. Share insights about your loved one’s health and voice concerns no matter how big or small.
  4. Building a rapport between caregivers and the HCP team will help reduce anxiety levels significantly, especially when entrusting with a loved one.
  5. Gather a list of the available resources including support groups, educational programs and events, local advocacy groups, and available counselors experienced in caring for the loved one.

When someone receives a difficult and unexpected diagnosis, many other individuals in the patient’s life are affected. Parents and families are faced with a complex and difficult journey. As a Clinical Nurse Educator, we educate parents and families about disease etiology, available treatment options, medications, and provide resources. Clinical Nurse Educators play an important role by providing as much education as possible, enabling and empowering parents and caregivers to make the most informed and educated decisions about the care of their loved one.

* Gene and Jill Gallagher shared their story to help bring awareness to the needs of caregivers for people who receive a difficult diagnosis such as a congenital heart defect.