After their son was diagnosed with a congenital heart defect as an infant, Maven Amora's parents used Facebook to raise 1 million Philippine Pesos for his life-saving open-heart surgery.
Our son Maven was born on Oct. 22, 2011. Two days later, doctors told us he would one day need open-heart surgery.
A short, bald doctor came to see my husband, Kristoffer, and me in the maternity ward. Maven had a heart murmur, he said, and wanted to run a few more tests. We agreed and they wheeled our baby away to perform a 2D Echo, a highly-detailed ultrasound, of his tiny heart. He came back with the news: Maven had a congenital heart defect (CHD), and while he’d need to undergo surgery someday, that hopefully wouldn’t be any time soon.
Of the four defects found inside Maven's heart, the doctors' biggest concern was something called aortic stenosis. A valve leading to his lungs was constricted and the limited blood flow meant less oxygenated blood, or clean blood, was circulating through his body. The imbalance of oxygenated and unoxygenated blood made it difficult for him to breathe, so it became our job to make sure he didn't do any stressful activities. For an infant, that can include something as simple as a feeding.
We watched over Maven closely for four months, until we noticed a change. One Saturday morning, he woke up from his nap, and after several minutes, I noticed he was irritable. He was crying and panting and his lips looked blue. Something was wrong. We tried to comfort him, and he fell asleep again, but he woke up again a few minutes later, lips still blue. Trying not to panic, I called the doctor to ask if we should bring him over, but the clinic was too busy to see him. I thought of rushing him to the E.R., but I was worried he'd have another "attack" in the car. We did our best to stay calm, but he had four more episodes that day. We were terrified.
When the doctor was able to see Maven on Monday, she told us that our son was suffering from Tetralogy of Fallot, a set of four defects of the heart and its major blood vessels that causes dangerously low oxygen levels inside the bloodstream. The condition can lead to "Tet spells," causing lips, hands and feet to turn blue, a phenomenon we had been acutely aware of since that weekend. Maven would need another 2D Echo, and there was a chance he would need to undergo open-heart surgery before his first or second birthday to correct the constriction.
As the doctor performed the second 2D Echo, I could see in her face that Maven would need the surgery sooner than we'd hoped. We waited for her to finish her report and then she confirmed it. Maven's condition had progressed to a point where they'd need to operate as soon as possible.
The good news was that babies who have corrective surgery usually do well. More than 90% survive to adulthood and live active, healthy and productive lives. Without surgery, death usually occurs before age 20. The bad news came as they explained the procedure: They would have to stop his heart and connect Maven to a heart-lung machine – something that would cost around nearly 1 million Philippine Pesos, a little more than $20,000. There was no way we could afford it.
We brought Maven home, and I roamed around like a zombie. Thinking that providing Maven surgery he needed wasn’t a certainty left me blank. I’d catch myself crying while driving.
One afternoon, I logged into my Facebook account. Between the two of us, my husband and I have about 2,000 friends. If these friends would contribute maybe just 100 pesos per person, we could reach our goal of one million pesos in a few months time. I created a Page, "Maven's Heart Fund," and started sending it to everyone we knew. It took us just two months to hit our goal, and by the time we got to the hospital for Maven's surgery that summer, we had raised 1.3 million Pesos.
Maven underwent open-heart surgery that July. Kristoffer updated Facebook – there were thousands of people connected to the page, waiting for news about Maven's condition – while I slept. People are always shocked to learn that I was asleep during my son's surgery, but I knew that when Maven got back, I wouldn't be able to sleep at all. I think my body was telling me to get all the rest I could and I listened, knowing that there were too many people praying for Maven for something to go wrong.
Thankfully, Maven's surgery was a success, and although we'll always have to monitor his heart, our son is healthy. We were lucky -- doctors said his condition bought us some time. Tetralogy of Fallot is considered one of the rare forms of CHD but can only be addressed through a surgery. Timing is key. Imagine yourself working out your biceps, for example. The more you work it out, the harder it gets. It's the same with the heart. If overworked, part of the heart can harden, something no amount of surgery that can correct it. The heart will have an irregular heartbeat for the rest of its life. We feel so grateful to people for helping us make sure this didn't happen to Maven.
There still aren't enough words to describe the feeling of our friends helping us; of strangers helping us. It's too deep. I thought it was impossible, but I knew deep down that if we just kept reaching out to people it would work out.
Now we want to give something back. We've created an organization called Let It Echo to help Filipino families who are also stricken with congenital heart defects. Here in our country, if your baby is diagnosed with CHD, your only option might be to go to a foundation. These foundations need to know that you're among the poorest of the poor, otherwise you're on your own. We've gone through it, and would like to help families through their fundraising, to talk to businesses on their behalf about donating, and we share Maven’s story as proof this can be accomplished. We're also finding new ways to raise awareness: People think it's an out of the blue diagnosis, but one in 100 babies born into the world will have this condition, this life. We were a family that is one in one hundred, and I'm sure we'll find more.
- As told to Alexandra Townsend