Every year, 100,000 babies don't make it to their first birthday because of CHD.

Remington's Story

On November 27th, 2013, our lives were forever changed when we welcomed our second son, Remington Daniel Maloof, into the world.  As with our firstborn, our expectation was that our second baby was going to be born completely healthy.   However, shortly after his birth, doctors discovered that Remington was only getting 40% oxygen to his brain and his skin was blue in color as a result.  It was in that moment that we knew something was terribly wrong with our baby boy.   Unable to diagnose him where he was born, our doctors informed us that they would need to transport Remington to a nearby hospital equipped with a neonatal intensive-care unit (NICU) in order to give him a fighting chance.  The doctors told us to prepare for the worst as they were unsure if he would make it through the ride because an ambulance properly equipped for his condition was unavailable at the time.

Through the grace of God, Remington survived the ambulance ride and doctors in the NICU at Queen of the Valley Hospital were able to diagnose him with a congenital heart defect known as  transposition of the great arteries (TGA).  This means the main arteries in his heart - the pulmonary and aorta - are switched, preventing sufficient amounts of oxygen-rich blood cells to be circulated throughout his body.  We quickly learned that although TGA is a life threatening congenital heart disease, it can be repaired through open-heart surgery.  This diagnosis required Remington to be airlifted to Children’s Hospital Los Angeles (CHLA) to receive the best care possible.  Although our hearts were broken and we feared the unknown, we felt extremely blessed that our son had a chance at life.  After one balloon catheterization procedure, one open-heart surgery, and one month in the hospital, our baby’s perfectly imperfect heart was repaired and we brought him home just in time for Christmas.

Remington at CHLA, one day old

Remington after open-heart surgery

Just as we thought we were turning a corner with Remington’s recovery, we received another massive blow of devastating news.  At a routine four-month old pediatric appointment, we were told that Remington’s head size had significantly grown from the previous month.  His doctor scheduled an emergency MRI of his brain.  minutes after the scan was complete we were told to go straight to CHLA.  The MRI showed that he had a large amount of fluid in his brain.  Before we knew it, Remington was back at CHLA, only this time for his brain, and not his heart.

Remington had his first brain surgery the following morning and it wasn’t until he was in the operating room that his neurosurgeon discovered he had actually suffered from an internal Brain hemorrhage.  The excess fluid that had built up was a result of the hemorrhage preventing the Fluid from circulating within his brain. We learned that the hemorrhage was likely a result of his heart surgeries, but was something that couldn’t be detected at that time.  In the months that followed, Remington had three more brain surgeries.  The first involved getting a Ventriculoperitoneal (VP) shunt installed.  As that didn’t correct his problem, the shunt was relocated in his third brain surgery.  His fourth, and hopefully final brain surgery involved repairing a defective VP shunt.  Remington has been surgery-free for both his heart and his brain since August of 2015.  We don’t know what the future holds for possible surgeries and treatment down the road, but today we count our blessings and thank God for our miracle that is Remington Daniel Maloof.

Remington Meets his older brother, Elwood, for the first time

The Maloof Family: Jonathan, Danielle, Elwood, Remington and Matthias

UPDATE: After a routine check-up appointment with his cardiologist, there was some concern that the repaired arteries in Remington’s heart had begun to narrow, a common side-effect of his condition.  On September 28th, 2016, he underwent another catheterization procedure to get a better look at the problem and potentially repair it.  Thankfully we were given a miracle that day, and it turned out that what the doctors were seeing was actually scar tissue and not a more serious problem.  We can’t help but to think that Remington’s brother and angel in heaven, Matthias Parke Maloof - born just a month earlier on August 28th, 2016 - played a big part in this miracle.

Through this journey it has been put upon our hearts to fight for those born with CHD.  As a result, we have formed the non-profit organization, Save the Heartbeat.  It is our goal to advocate for early detection, increase awareness, fund research & early detection programs, and engage in community outreach for those affected by CHD.  In honor of our son and the 1 in 100 babies born with CHD, please join us in helping Save the Heartbeat.