by Melissa Cohen, Cardiac Family Advisory Council Member

The numbness of my epidural hadn’t yet worn off when my beautiful newborn daughter turned blue. My husband and I only got to hold Makayla (“Mak,” as we call her) for two hours before she moved from our loving, warm arms to a tiny plastic isolette, and we wouldn’t be able to hold her again for three days. She was diagnosed the day after she was born with a congenital heart defect (CHD) called Tetralogy of Fallot, and was rushed to the cardiovascular intensive care unit (CVICU) at Rady Children’s Hospital-San Diego.

That was the moment when I became a heart mom.

Devastated, heartbroken and bewildered, my husband and I spent the first 24 hours researching everything possible about Mak’s condition, wondering if we would ever bring our daughter home. Mak was to have three more surgeries before she reached her first birthday. We would end up calling the CVICU at Rady Children’s our home away from home for the next year-and-a-half.

Recently, we celebrated more time out of the hospital than in. Our days are filled mostly now with laughter and joy (sprinkled in with a few toddler tantrums). But oh, do I remember the days, filled with so many questions and so much fear!

Being a parent to a child with a CHD often means spending weeks, months and even years in and out of the hospital. It means gaining an education in the medical field you never asked for because of the hours you spent researching your child’s diagnosis, participating in doctor rounds and chatting with nurses all day.

But I’m not alone. One unexpected blessing about having a child with a CHD is that you are welcomed with open arms into a beautiful heart community. The bonds between heart parents are fierce.  Our children may not necessarily share the same CHD diagnosis, but we can relate to one another so well because our traumatic experiences are the same.

Makayla observes a photo of herself in the Hospital

One group I’ve recently joined has allowed me to give back to the hospital that saved my daughter’s life. The new Cardiac Family Advisory Council (CFAC) is a group of committed volunteers that partner with Rady Children’s Hospital’s Heart Institute leaders to make meaningful changes to benefit patients, clinicians and caregivers.

Our mission is to “integrate the patients and family perspective into the vital work of Rady Children’s Heart Institute. Through advocacy and collaboration, we will advance the knowledge of, and excellent care for, people with congenital or acquired heart disease.”

The CFAC comprises 15 voting family members, Partners in Care (PICs), and current and former patients. Also in attendance are hospital leaders and patient care staff. Although the CFAC is brand new to Rady Children’s, they have already been hard at work tackling many health and safety issues that affect both the hospital staff as well as the patients and families.

The progress from our first four meetings includes the following:

  1. Supplying disinfectant wipes next to the access phone outside of the CVICU doors
  2. Initiating and bringing to life an “ask me if I’ve washed my hands” campaign to help families feel more empowered to ask providers about upholding safe hygiene practices
  3. Placing posters throughout the CVICU (including “how-to” diagrams and fliers) reinforcing the importance of hand washing by ALL family members and visitors while in the CVICU to ensure the safety of patients

The CFAC isn’t just concerned about hospital safety and hygiene, though! Educational, mental health and emotional support for cardiac patients and caregivers are critical reasons this council was put into place. Some of the topics the CFAC is eager to address in 2019 include the following:

  1. Continuing to promote safety and infection control
  2. Supporting the mental well-being of caregivers
  3. Helping patients transition from pediatric/adolescent to adult care
  4. Providing feedback on outreach and family education materials given to PICs

The other CFAC members and I want families and caregivers to know you are not alone — let us be your voice! If you have a suggested topic for future CFAC discussions, we want to hear from you. To submit a suggestion, email Nichole Elise at nelise@rchsd.org.

***Although the CFAC is currently at membership capacity, we invite any prospective members to join the wait list by filling out an application. Please email Nichole Elise at nelise@rchsd.org for more information.

For details on additional Family Advisory Council committees, visit https://www.rchsd.org/about-us/who-we-are/family-advisory-council/.