On the eve of his very first birthday Max and I, optimists at heart, are deeply grateful you’re taking the time to learn about Rafael’s journey to Earth. His story begins at 22 weeks, when an unexpected complication transformed what had been a healthy, active pregnancy into something fragile.

We leaned heavily on our village as I could no longer lift our daughter, Etta, and needed help with daily tasks. Weekly ultrasounds reassured us Rafael was “perfect;” our initial anxiety was replaced by growing excitement to meet Rafael with every day he gained in utero. 

Finally, Rafael was born via emergency C-section at 36 weeks. Though he wasn’t full term, it was a miracle we had made it as far as we did. Unbeknownst to us, or our medical team, Rafael had an undiagnosed heart defect. Within minutes his oxygen saturations plummeted and he was intubated (requiring mechanical assistance to breathe.) We learned that what initially looked like a respiratory issue was something far more concerning - by stroke of luck, the one technician qualified to perform a newborn echocardiogram (ultrasound of the heart) happened to be working that day to deliver the news.

We learned Rafael had d-Transposition of the Great Arteries - a life-threatening congenital heart defect where the two major arteries (the aorta and the pulmonary arteries) are reversed, preventing your heart from getting oxygenated blood to the rest of your body and brain. 

Now Earthside, and not able to oxygenate blood through mom, Rafael and the medical team were fighting to keep the hole in his heart open, deploying a medication that AVH hadn’t used in over a decade. The atmosphere was tense. Rafael was kept behind the nurses’ station, surrounded by a swarm of people at all times. He required resuscitation in his first hours of life (nightmarish), and immediate transport to a higher level hospital that could care for his complex needs. But all transport teams denied our requests for flight as a heavy spring snow fell in the mountains that night. 

So, we waited and we hoped.

That snowy morning, in a break in the storm, a Flight for Life team was finally able to land, secure Rafael into a mobile ICU, and transport him and Max from AVH to the plane awaiting on the tarmac. They were able to take off and safely deliver Rafael to Children’s Hospital Colorado (CHCO) where a world-class cardiac team awaited him.

Upon arrival at the Heart Institute at CHCO, a battery of tests were performed, new medications were administered, and Rafael was quickly stabilized by the best care providers in the game. While we awaited our open heart surgery (the only “fix” for Rafael’s condition,) we learned about the complexity of the heart, the variety of defects, and impacts it can have on a family. We quickly considered ourselves lucky to “just” have dTGA to contend with. 

At five days old, Rafael underwent a life-saving arterial switch operation performed by Dr. Jaggers. The surgery required our tiny baby to go on cardiopulmonary bypass - a machine that both breathes, and pumps Rafael’s blood for him so that they can stop the heart to do the repair (fun fact: babies under 5kg generally require blood transfusion in order to do bypass since they have such little blood volume of their own.) Handing over our newborn for open-heart surgery was like handing over a piece of our own hearts, but we trusted it was our best, and only, shot.

The surgery was successful (“textboook” in the words of Jaggers!) In total, we spent 23 days in the hospital learning how to eat, monitor and administer oxygen, care for his incision, and finally were incredibly blessed to be able to bring him home (o2 tank and all.) Rafael will be closely monitored for the rest of his life; but thankfully, his most recent echocardiograms were very positive and we continue to be deeply grateful for every single healthy day he has.

There were countless moments where Rafael could have slipped through the cracks, moments where he almost didn’t make it.

Yet, today he's thriving. He is joyful, determined, and army crawling after his big sister.

Because the right people were there. Because of decades of research. Because of access to life-saving care.

He is living proof of what modern medicine can do.

Every family with a child like Rafael isn't this lucky. 

Congenital heart defects affect 1 in 100 babies and remain a leading cause of infant death. Yet funding for pediatric heart research is insufficient.

That’s why we are running the New York City Marathon in support of the Children’s Heart Foundation.

They fund the research that makes stories like Rafael’s possible, and that will change outcomes for the families still in the thick of it.

This race is 26.2 miles long, but for CHD families, the journey is far longer.

We are running for Rafael. For families still waiting on their miracle and for a future where more babies get the chance he did.

If his story moves you, we would be deeply grateful for your support.

With love,

Kiki, Max, Etta, and Rafael

Pictured below: Our first photo with Rafael after his surgery.