Complex from Birth

David Collins was just a few hours old when he was rushed to Cincinnati Children’s, where he was diagnosed with hypoplastic left heart syndrome, or HLHS. 

HLHS is one of the most complex cardiac defects seen in newborns and remains probably the most challenging to manage of all congenital heart defects. In a child with HLHS, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped. 

David underwent a “staged reconstruction” to reconfigure his cardiovascular system and had his first surgery, the Norwood procedure, as a newborn. At 4 ½ he had a Fontan procedure, and by age 10, he had his first pacemaker implanted.

Curve Ball

Despite his intensive medical condition, David, now 21, was active socially and did well in school growing up. He met his now-fiancé, Kennedy, in sixth grade and they remained friends until they began seriously dating in high school. He proposed to Kennedy in December 2014. At 19, David was engaged to his high school sweetheart and had survived a number of medical miracles.

Life was good until he received the additionally challenging diagnosis of hypoglycemia, or low blood sugar. On top of managing a complex heart condition, David now had to learn a variety of symptoms for hypoglycemia including shaking, clamminess and dizziness. He even struggled to get air in his lungs at times when his blood sugar went low. Hypoglycemia was a tough adjustment for David. It could hit at anytime, anywhere – even if he was just sitting at his desk. 

The unpredictability made David feel anxious and timid to leave home. For the first time, he started turning down plans with friends and staying home. He was struggling with his independence and ability to live life. Until he almost lost his life.

“My heart stopped beating for 30 seconds.”

In December 2015, 20-year-old David was celebrating the holidays at a family reunion. When it was time to leave, David joined Kennedy and his twin brother, Daniel, in running to the car to get out of the cold. But suddenly, he was unable to catch his breath and began feeling fatigued. Then he went numb. David soon passed out in the car. While Kennedy ran back to the reunion for help, Daniel, who is in the Army Reserve, performed CPR and resuscitated David while they waited for paramedics to arrive. 

David’s heart had stopped beating for 30 seconds. 

His episode was a sudden cardiac arrest, or SCA, associated with ventricular tachycardia. Upon arriving at Cincinnati Children’s, he underwent cardiac catheterization. David was discharged with an external defibrillator life vest and returned in February 2016 for another pacemaker and an implanted cardioverter defibrillator (ICD).

Carpe Diem

Reflecting back on his 30 seconds without a heartbeat, David had an epiphany about life. He realized he had a choice of two fates: a low-risk, safe reality as he had been living, or a joyful, adventurous reality (with medical considerations). 

David chose to embrace life and its opportunities.

Choosing to seize the day opened his eyes up to how much he had been missing. He stopped staying home and began saying yes to friends’ invitations. The more he stepped out of his comfort zone and relinquished his status as a shut-in, the better he felt. David was gaining back his independence and confidence.

David has been capturing his joy since. He is active and enjoys riding bikes with his twin, Daniel, and their dad. He is spending more quality time with him mom. He is focused on school and studying information technology. He is enjoying driving longer distances alone. 

David greatly values his newfound quality of life and is excited about the future, especially February 2019 when he will marry the love of his life, Kennedy.