Living with a Congenital Heart Defect

Living With a Congenital Heart Defect

“He requires many medications daily and needs to be monitored closely. He is a very independent little guy and can dress, feed, and shower himself – he just needs help with preparing and supervision.” – Joe’s Mother, Valerie

Joe is an energetic 12-year-old who was born with Down syndrome and a congenital heart defect. He loves to play Legos, video games, and loves being outside whenever he can.

Though his kindred spirit would never show it, Joe is currently in heart failure and his only intervention left is a heart transplant. Joe is one of over 400 children each year who requires a heart transplant.

“Wait-list time for transplantation varies depending on their size, blood type and waiting status. Typically a patient would wait weeks to months before an appropriate donor offer is available. It is not uncommon to wait for over a year.” – Cincinnati Children’s

But waiting for a heart transplant isn’t slowing Joe down! Joe, among many others, receive care at home while they wait for an appropriate donor.

Team Select’s Long-Term Adult and Pediatric Care Services provide care for over ____(waiting for Christian) patients with congenital heart defects and understands the importance of continuing education and awareness, especially during American Heart Month.

According to the Children’s Hospital of Philadelphia, congenital heart disease is about 60 times more prevalent than childhood cancer and affects approximately 40,000 babies born in the United States each year.

Joe has been a patient with Team Select since 2020 and is currently awaiting a Registered Nurse (RN) or Licensed Practical Nurse (LPN) to take his case and provide him and his family full-time care, based out of Team Select’s St. Louis, Missouri branch location.

Our Long-Term Pediatric and Adult Care Services offer a unique plan of continuous care coordination between family members, clinicians, and the patient. We proudly provide:

  • Continuous Hourly Nursing Preemie/Pediatric High-Tech Care
  • Tracheostomy Care
  • Nursing for Ventilator Dependent Patients
  • Enteral Tube Feedings
  • 24/7 On-Call Service

And care for all the following diagnosis but not limited to:

  • Cardiovascular Anomalies
  • Respiratory Disorders
  • Neuromuscular Disorders
  • Congenital Anomalies
  • Feeding Disorders
  • Hematologic Disorders
  • Endocrine Disorders
  • Gastrointestinal Disorders
  • Colostomies
  • Ileostomies
  • Neoplastic Diseases
  • Traumatic Brain/Spinal Injuries
  • Neurological Disorders
  • Genetic Anomalies
  • Quadriplegia/ Paraplegia
  • Premature Birth
  • Immunologic Disorders

Continue advocating for children with a heart defect like Joe to receive the quality care and educational support he needs to live a healthy life. Learn how you can advocate and view the 2022 American Heart Month Toolkit created by the CDC.  

Share this blog article on your social media pages using #AmericanHeartMonth #ATeamSelectStory.

A special thank you to Joe and his family for sharing their story with the Team Select Family to help spread awareness of the educational importance around congenital heart defects.

Resources

www.cincinnatichildrens.org/health/h/transplant#:~:text=Over%20400%20heart%20transplants%20are,for%20Heart%20and%20Lung%20Transplantation

https://www.chop.edu/pages/get-facts-about-congenital-heart-disease