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

Your Heart Warrior of the Week is Sonny James Hoffman! Sonny was born on June 14th, 2018, and for the first few hours of his life he appeared to be a happy and healthy baby boy. That was until he went into cardiac shock while receiving a bath in the hospital nursery at around 24 hours old.

After some tests were performed, little Sonny James was diagnosed with hypoplastic left heart syndrome (HLHS). Shortly after his diagnosis and at just one week old, he underwent the Norwood surgery with a BT shunt – this is the first in a series of three open-heart surgeries that are used to treat HLHS.

Sonny underwent his Glenn procedure (surgery #2) just a few weeks ago on October 3rd. As is common after open-heart surgery, he faced some serious and worrying setbacks on his road to recovery but he pushed through and got discharged about two weeks after surgery!

Throughout his short 5 months of life, Sonny has spent about 8 weeks in the hospital and still has at least one more major surgery to go which will take place when he is 3 or 4 years old. He is currently on aspirin which he will likely have to take for the rest of his life. He is also on digoxin and lasix; those are a temporary medication for him.

Despite all he has been through, his Mom, Alyssa, says he doesn’t face any restrictions due to his heart condition at this time and is a “normal” baby! She does worry about her CHD Warrior however, adding:

We face many worries and challenges as a CHD family - the uncertainty of time, uncertainty of his future, but we have lots of hope as there are so many medical advancements for single ventricle kiddos!

My child had been given a second chance at life. We were told he was not a candidate for surgery and our only option was to take him home to die. We asked for another opinion, and he is here today and thriving! He is so resilient and is stronger than anyone I know.

My goal in life now is to help other CHD/HLHS families. Our postnatal diagnosis turned our entire world upside down and we had been living away from home for months while we awaited his next surgery. It’s a scary road, but these babies are so resilient and there is so much hope for CHD kid!

Alyssa says Sonny is resilient, strong and an “old soul,” and we couldn’t agree more looking into those eyes of his!

About Sonny’s Heart Defect

Anatomy: In an HLHS heart, most or all of the structures of the left side of the heart are underdeveloped or missing altogether.  This includes the left atria, left ventricle, aorta and mitral valve. Basically, they are born with half a heart.

Complications: Because the mitral valve is very small or not developed at all, this prevents blood from entering the left ventricle. As a result, blood is diverted to the right atrium through an atrial septal defect (hole in the heart). Because the left-sided structures of the heart are essentially missing, the right ventricle collects both oxygen-rich blood from the lungs and oxygen-poor blood from the body. It is also responsible for pumping blood to both the lungs and the body. Since deoxygenated and oxygenated blood are mixing and being pumped to the body, HLHS babies are cyanotic (blue in color) and have low oxygen levels.

Symptoms: Rapid breathing or shortness of breath, rapid heartbeat or pounding heart, poor suckling and feeding, cold extremities, blue color of the skin, lips and nailbeds (cyanosis), overall body weakness.

Treatment: HLHS is treated with a three open-heart surgeries called the Norwood, Glenn and Fontan procedures.  HLHS is sometimes treated with a heart transplant as well.

Prevalence: HLHS accounts for approximately 2-3% of all congenital heart defects. It occurs in 2-3 out of 10,000 live births worldwide.

Leave a comment