Saving the newborn

Given all the political, economic and even meteorological turmoil we’ve recently been going through, I thought I’d write about something undeniably and visibly positive this week, if only to remind us that good things are possible if the “whole of government” – including even our fractious Senate – puts its mind to it.

Full disclosure: I’ve been editing a book on, of all things, the Philippine Newborn Screening (NBS) program, and I’ve been so impressed by what I’ve come across that I requested and secured permission from its author, Dr. Carmencita D. Padilla, to share some highlights of that program. Dr. Menchit, as we call her, is no ordinary physician; a clinical geneticist and pediatrician, former chancellor of UP Manila and a key figure behind its National Institutes of Health, she was named National Scientist in 2023 for her contributions to medicine.

Back in 1990, Menchit had just returned from a fellowship in Sydney, brimming with enthusiasm about NBS, which had already been adopted and routinely practiced in Australia.

What NBS addresses is this: babies can be born with any of almost 30 conditions inimical to their health, including congenital hypothyroidism (mental retardation and growth delay, with IQ loss possible as early as the second week of life), congenital adrenal hyperplasia (salt-wasting crisis, shock, death by the end of the first week), PKU and galactosemia.

A newborn with any of these conditions looks perfectly well: doctors and mothers will see no rash, no fever, no warning. Looking healthy, the baby will go home, with the disorder hidden for months, or even years, until the symptoms appear – by which time, it could be too late to reverse the damage. Ironically, if the problems are spotted early, there are treatments available, often as simple and as cheap as a modified milk formula for phenylketonuria (PKU), which causes irreversible intellectual disability if left alone.

So early screening of all newborns is key. The process itself is fairly straightforward: “puncturing the heel of a newborn, absorbing a few drops of blood onto a special filter paper card and transporting the specimen to a specialized laboratory for testing.” These cards could be easily mailed to a central laboratory. In the early 1960s, an American microbiologist named Dr. Robert Guthrie – whose own son and niece suffered from developmental problems – created a test to scan blood samples for indicators of anomalies and proposed this solution. But the medical and scientific communities shunned him, until sufficient publicity forced them to see he was right.

It would take more than 30 years for NBS to reach the Philippines, largely through the efforts of Dr. Carmelita Fagela-Domingo, who had seen NBS working in the West and tried her best to persuade the Philippine health bureaucracy to adopt it, and Dr. Padilla, who finally succeeded where Dr. Domingo had initially failed.

What worked for Menchit Padilla was the support of people like Dr. Domingo herself and UP College of Medicine Dean Alfredo Ramirez, and subsequently other allies in both executive and legislative branches beyond academia. Together, the two women pushed for a comprehensive pilot study that could form the basis for official government policy. Padilla also met Dr. Guthrie, who encouraged her to persevere in the effort.

Twenty-four Philippine hospitals took part in the study as members of the NBS Study Group. Private donors contributed computers, video cameras, fax machines and pagers. A Finnish company donated a refurbished NBS machine. By 1997 the program was well underway. What was needed now was for the DOH to take over for the program’s full implementation nationwide. By 2000, there were still less than 200 hospitals out of 3,000 birthing hospitals participating in the program.

What was needed was an enabling law. This is the part of the story that I find most instructive, given our current Senate, and which I urged Dr. Menchit to include in her book (which she did, despite her initial misgivings).

Because they couldn’t afford a lobby group, Menchit took it upon herself to draft the bill – after enrolling for a Master of Arts in Health Policy Studies degree at UP Manila. (I wonder how many of our lawmakers would go that far to get things done right – but then of course they have millions to spend on staff.)

Versions of the bill were filed at the House and Senate early in 2003, but by mid-year, hearings had yet to begin. To get the bill certified as urgent, its proponents had to get the support of senator Juan Flavier, who warned them that it would likely take 10 years to get the bill passed. Desperate, Padilla turned to Sen. Loren Legarda, who was still hosting a talk show; between breaks, Menchit filled her in and persuaded Loren to start hearings on the bill and to file her own version, which she did on Aug. 1. I’ll leave the rest to Dr. Padilla’s recollection:

“With barely three days until the end of the 12th Congress, we were advised to lodge an appeal for an ‘urgent bill’ with the House Presidential Legislative Liaison Officer, Undersecretary Bernardino Sayo.

“It was a Wednesday, 5 p.m. We went to his office at the House of Representatives. After listening to our desperate appeal, which was supported with albums full of pictures of saved and not-saved babies, Undersecretary Sayo agreed to arrange for a certification of an ‘urgent bill’ to be signed by president Gloria Macapagal-Arroyo the following day, Thursday at 10 a.m. We were advised to return to the House of Representatives the following day for the second reading at 4 p.m., the last day of the session at the House. With the bill now certified as urgent, our schedule for a second reading was bumped up. House Majority Floor Leader Neptali Gonzales, fortunately for us, helped the bill pass the second reading in the midst of calls for adjournment from the floor.

“Garnering a unanimous affirmative vote, the bill moved to the required final third reading the following day, Friday, the last day of the 12th Congress. I received a phone call at 6:30 p.m. from the chief of staff of senator Flavier, Mon Navarra. He said, ‘The NBS bill was passed into law! We were able to do it in 10 months – not 10 years!’ And since the House had adopted the Senate version in its earlier deliberations, there was no need for a bicameral session. We just had to wait for the signature of president Gloria Macapagal-Arroyo, which happened on April 7, 2003.”

The NBS bill, RA 9288, had itself become something of a miracle baby, giving hope to millions of newborns and the yet-unborn. Today well over 90 percent of Filipino newborns are covered by NBS, with a 100 percent rate targeted by 2028. Would that our government were so singularly and charitably minded in our other national priorities, especially for those already long born!

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Email me at [email protected] and visit my blog at www.penmanila.ph.