For Drew — The Never Miss A Beat Foundation

March 20, 2018, a beautiful Andrew Michael Crivello was welcomed to the world. Andrew was born at Kaiser Hospital in Los Angeles. A beautiful city where the sun is shining and the days are perfect. On March 20, however, Andrew and the Crivello family’s day was far from perfect.

Andrew was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Andrew’s left side of his heart was nonexistent. In most cases with patients that have HLHS, the left side of the heart is severely developed. They transported Andrew to Children’s Hospital of Los Angeles at just five days old to undergo his first of the planned three open heart surgeries.

Surgeons performed the first surgery called the Norwood on little Andrew. The plan was to complete this surgery successfully and then when Andrew grew to be bigger (around 6 months old) he would have his second surgery. Unfortunately, after the surgery, Andrew’s heart stopped. Anthony and Kaitlin Crivello (Andrew’s parents) were rushed out of his room while nurses and doctors performed compressions while the Surgeons were simultaneously hooking him up to the ECMO machine, aka life support.

Andrew was on life support for a week and was successfully able to come off it but it wouldn’t stop there. Andrew would continue to ride a roller coaster of his health. According to his parents, most days he would be uncomfortable and in pain, along with suffering from delirium. Some days, Andrew would be alert and even smiling when making eye contact with his parents.

When conducting an echocardiogram of Andrew’s heart one day, the doctors realized that one of his good valves in the right side of his heart was failing, causing blood to regurgitate back to where it was getting pumped from. The only fix was for him to undergo another open-heart surgery.

Andrew received his second open heart surgery at around six weeks old to repair the failing valve. It was a successful surgery and he appeared to be doing so much better during his recovery.

After this surgery, there was much more hope during his recovery. But, a week later, his blood work was concerning, and another Echocardiogram was conducted. The repaired valve was failing again. The surgeons evaluated the valve, and this time it was inoperable.

At this point, Andrew’s parents thought about Andrew’s seven weeks of life. They thought about his potential for a future life. Kaitlin and Anthony agreed to no longer just “keep him alive” and agreed to only accept progress on his health. As you can imagine, It was an extremely difficult decision but very sacrificial and loving for our boy.

Andrew’s parents made a goal with the doctors to have him off his breathing machine in seven days. He was on track to come off it and he successfully came off a week after their decision. They held him for the first time without his breathing tube. Kaitlin and Anthony were hopeful and happy.

The next day Kaitlin and Anthony were given bad news. His blood work showed that his heart was working extremely hard. It was working so hard that the numbers that indicate “heart failure” were unreadable and off the charts. This meant that Andrew would not be coming home with his parents. Kaitlyn and Anthony made the hardest, selfless decision of our lives.

They decided to remove all medical intervention that was keeping the heart pumping. Fentanyl, a pain-relieving drug, would be the only medicine he would be taking. They did not want to keep him alive, suffering, in pain, just so they could have our their son be with them.

Kaitlin and Anthony held Andrew, sang to Andrew, and stared at him all day long. Family members came to say their goodbyes. Kaitlin and Anthony snuggled on a twin size hospital bed with Andrew that was provided by the nurses.

Sadly on May 20, 2018, at 12:50 A.M. Andrew passed away in his parent's arms. A painful day for any parents to have to go through and the Crivello family endured the worst of it. Andrew’s life was short but it was cherished and loved in the time that he had. A lot of times we hear about the good and miracles with Congenital Heart Disease but there are so many cases like Andrew where it takes lives too early.

What is life after Andrew’s passing for the Crivello family? They are doing what all parents should do with a child that has a CHD. They are raising awareness. Just recently, Anthony participated in a marathon in honor of Andrew. He and his wife are continuing to raise awareness day by day so that no family and child has to go through what Andrew and the Crivello family once went through.

Fly high, Andrew. #ForDrew