Every year, 100,000 babies don't make it to their first birthday because of CHD.
Jessica Elena Manning | Heart Warrior of the Week

At just 23 years old, Jessica Manning has undergone more surgeries and procedures than most people do in their entire lifetime.  Her battle with CHD began back in 1993 when she was just three days old.  Her mom noticed that her lips would turn blue and she would struggle to breathe after every feeding.  Baby Jessica returned to the hospital where she was diagnosed with six heart defects over a two-week period: double inlet left ventricle[1], a hypoplastic right ventricle[2], atrial septal defect (ASD)[3], ventricular septal defect (VSD)[4], transposition of the great arteries (TGA)[5], and leaky valves[6].

In her 23 years of life, she has undergone four open-heart surgeries, a limited access surgery (through the back), two pacemaker surgeries, one lung surgery, and more than 50 small procedures like biopsies and catheterizations.

  • First open-heart surgery: a banding surgery to restrict blood flow to the lungs at five months old.
  • Second open-heart surgery: the Fontan procedure to reconstruct the undeveloped right ventricle at three years old.
  • Third open-heart surgery: to patch a hole that was made to relieve pressure in the heart during the Fontan procedure at six years old.
  • Fourth open-heart surgery: aortic repair at 18 years old.
  • First pacemaker surgery: pacemaker was inserted into the abdomen, this was followed by an emergency lung surgery in which doctors fused her right lung to the chest wall to stop a chyle leak, also at 18 years old.
  • Second pacemaker surgery: heart-retiming surgery where doctors added another wire from the pacemaker to the heart in hopes of synchronizing the heartbeat to make it pump stronger at 22 years old. Unfortunately this surgery was unsuccessful.

chd, congenital heart disease, chd awareness

Due to the complicated nature of her heart and the many complications she has faced before, during and after her many surgeries, Jessica estimates that altogether she has spent about four to five years in the hospital.  To keep her bandaged heart pumping, she takes six different medications throughout the day, some of which will likely be for the rest of her life.

This brave Heart Warrior is currently on New Zealand’s waiting list for a double organ transplant (heart and liver).  When the time comes, she will be the country’s first heart and liver transplant ever performed on a Fontan patient.  It is extremely risky due to her lowered level of blood circulation; this comes with a higher death rate and longer recovery period.

Jessica says she gets exhausted doing normal everyday things that the average person takes for granted and she’s noticed her endurance has significantly lowered in the last couple years.  Simple things like taking a shower and putting on makeup leave her feeling tired and out of breath. Any physical activity, even things like walking and going up stairs, turns her lips blue and leaves her completely drained.

Our Heart Warrior of the Week describes herself as a positive thinker and full of life despite the limitations her heart puts on her. She said the following when asked about the worries and challenges she faces being an adult CHD survivor:

For the past 5 years, the challenges have not stopped.  However, I'm hoping after my double organ transplant that I will be able to live the life I have always wanted to live once I am fully recovered.
What I have learned about living with CHD is not to dwell on what you cannot change. Yes, times get hard. But however bad things get, it doesn’t last forever.  I’ve found that a positive mind results in a positive outcome – always hold onto hope and believe in yourself. Growing up, my mother taught me that there are so many people in this would who have it worse than I do, so I always try to appreciate what I do have. Every day above ground is a great day and I am thankful and happy to be here another day, sharing my story and spreading awareness with the world. Things can get extremely hard living with CHD, but NEVER give up!

[1] Both atria are connected to the left ventricle. As a result, oxygen-rich blood and oxygen-poor blood are combined. This mixture leaves the body with low levels of oxygen.

[2] The right ventricle of the heart is severely underdeveloped or missing altogether, this compromises the normal function of the heart.

[3] A hole in the wall that separates the left and right atrium (upper chambers of the heart).

[4] A hole in the wall that separates the left and right ventricles (lower chambers of the heart).

[5] When the two main arteries of the heart (aorta and pulmonary artery) are switched, resulting in deoxygenated blood being re-circulated to the body before picking up oxygen and oxygen-rich blood continuously being pumped back to the lungs; this leaves the body with dangerously low oxygen levels.

[6] The heart has several valves that prevent blood from regurgitating backwards as it’s pumped through the heart. Leaky valves compromise this function.

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