Science Just Saved My Daughter—The Most Important Reason Why I #StandUpForScience

April 19, 2017 | 3:01 pm
Juan Declet-Barreto
Senior Social Scientist for Climate Vulnerability

The morning of April 4, 2017 began with excitement. My family and I were ready to fly to Boston, where we were to meet up with friends and their children at the geography conference. Our five-month old baby Amaia had lost some weight and been all kinds of fussy over the last two weeks, so we stopped to see her doctor in the morning thinking she would get some antibiotics for a stomach bug and we would be on our way.

Instead, the doctor called the National Children’s Hospital in Washington, DC, and told them we were coming. Amaia had not nursed or soiled a diaper for too many hours, and her constant grunting told the doctor something was wrong. At the emergency room, things got jarring quickly. The blood, stool, and urine work did not reveal any infections or much else.

But when doctors ordered fluids and these kicked in, her grunting and difficulty breathing got much worse. At that moment, a lot of medical professionals started coming and going into our room. We got scared when we saw what looked like paramedics standing back ready for action, gloves on, ready to go.

It was obvious to us they were waiting for our Amaia to crash so they could jump and resuscitate her.

Cardiologists explained to us that Amaia had a rare condition called cor triatriatum, which means “three atria in the heart” (instead of the normal two!), a congenital malformation in her heart. An extra layer of heart tissue was making blood flow difficult, and worse, it was making fluids flow into the lungs. The surgeon told us very flatly that we either allowed her to be operated on to remove the tissue, give her a blood transfusion, and rebuild the septum, or her heart would collapse at any moment and she would not live.

There was no decision to make, no real choice in front of us. I know the hospital makes one sign consent forms because there are legal issues and people who have religious or other objections to blood transfusions or surgery. My wife believes in God and science; I believe in science and trust the medical professionals to do what they do best.

I looked each of them in the eye before they took her and saw confidence and professionalism. I pleaded to them silently to bring my girl safely back to me.

They did. Amaia spent 6 hours in the operating room. She came out around midnight and we saw her little, fragile but unfathomably resilient body fight for her life. She is now at home recovering quite nicely from her ordeal.

In retrospect, I’ve asked myself how doctors and nurses were able to diagnose and correct her certainly fatal heart malformation. The answer is science. Science built up over the centuries, with increasing medical knowledge, along with technology.

First, doctors conducted blood, urine, and stool analysis on Amaia to rule out viral infections or bacteria. Then X-rays of her chest revealed fluid in the lungs. An electrocardiogram (EKG) showed that the electrical signals of her little heart were off. The final proof of evidence and the “aha!” moment for doctors came with an echocardiogram (a Doppler image of the heart’s structure), which showed clearly that there was a third chamber in the left side of her heart.

A team of the best pediatric cardiologic surgeons, nurses, nurse practitioners, and anesthesiologists worked to install a cardiopulmonary bypass— essentially a pump—to reroute her heart’s blood, lower its temperature, stop it for a few hours, and operate to restore our daughter’s heart. She recovered in state-of-the-art cardiac intensive care and heart and kidney recovery units at the hospital, all made possible by scientific discoveries, technological developments, and the care and compassion of the medical personnel.

Being a social scientist, I’ve also asked myself why there was not a clear line of evidence and medical inquiry that led doctors straight to her condition. After talking to the medical personnel, I’ve come to the conclusion that in spite of the advanced state of today’s medical sciences, there is much more to research and understand so we can cure and manage more diseases.

You see, Amaia’s condition occurs only in 0.1 – 0.4 percent of all cases of heart disease. EKGs and echocardiograms done in utero during my wife’s pregnancy did not find anything wrong with her heart. These facts suggest to me that there are knowledge as well as technological limitations to our medical sciences.

These gaps in understanding can only be filled with more research, more funding, and more scientifically sound investigations. But the current administration has proposed to slash the budget for the National Institutes of Health (NIH)—the main federal medical research institute—by nearly 20 percent! Why is this important?

If the top research papers in an internet search are an indicator, it can be said that a lot of the research that made possible a surgical cure for Amaia’s heart disease was funded by the NIH.

There is more to government-funded science, of course, than the NIH. Worrisome proposed budget cuts have combined with political interference in science to create a toxic environment at other federal agencies that work to protect our health. President Trump has taken a “wrecking ball” approach at demolishing climate protections; his head of the EPA consistently denies the reality of climate change; and Trump’s racist and misogynist attacks on immigrants weaken both science and the social fabric of the United States that contributes to a fact- and evidence-based scientific culture.

I am not willing to stand by as science-based protections to air, water, soil, and tiny hearts like Amaia’s are compromised in the name of the special interests of polluting industries. That’s why I will march for science this Saturday April 22.

And I am not alone in this. Early reports are coming in that across the country and world, scientists, teachers, parents, workers, and more, are getting ready to highlight the value of science to public health and the environment and to stress that political interference and the wholesale disregard for protections to our health and environment are unacceptable.

Scientific understanding of the world at all scales—the microscopic, the human body, the planet—is needed to face the challenges that threatens us. Our baby Amaia survived her first trial due to the power of the women and men of science. We must all #StandUpForScience together.

About the author

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Dr. Declet-Barreto earned a Ph.D. in environmental social sciences, M.A. and B.S. degrees in geography, and an associate’s degree in geographic information systems, from Arizona State University. At UCS, his research maps, analyzes, and finds solutions to the unequal human health and livelihood impacts of environmental hazards, particularly those exacerbated by climate change.