Reflections on a child’s first birthday

She came into the world a year ago today, the first grandchild of my sister Raquel.  Her parents named her Erin, a lovely Gaelic word derived from “Eire” or Ireland.  On this blessed day, they have ordered a cake and balloons for the little girl, acutely aware that her first birthday could also be her last — unless, by an act of numinous grace, her fragile presence could be extended.  She was born with a rare disease, and she needs a liver transplant.

Many babies acquire a yellowish discoloration on their eyeballs and their skin within weeks of their birth.  Doctors call it jaundice, a sign that usually suggests that the young liver of the newborn may not yet be fully operational.   In most instances, this condition soon goes away. In Erin’s case, the yellow pigmentation lingered, sometimes deepening into a dark shade of olive.  It also showed in her claycolored stools, an indication that the passages through which the bile flows might be blocked.  This was no longer ordinary jaundice.  Tests were done, and the condition of the two-month-old infant was declared a case of biliary atresia.

The ducts on Erin’s liver that serve as pathways through which the bile drains are hardly formed. Instead of draining into the small intestines, the bile is thus trapped in the liver where it slowly destroys liver cells.  The causes of biliary atresia still baffle researchers. In the US and Europe, one in 15,000 babies is born every year with this disease.  In Asia and Africa, the incidence is higher.  Curiously, it tends to afflict mostly first-borns.

It is not known how many Filipino babies are born with this condition every year.  It must be quite high.  The first time I heard the term was in a television show hosted by Karen Davila.  I later read about it in a magazine article that featured the almost miraculous recovery of the granddaughter of a friend, Jess Matubis, who waged a heroic campaign to save her from the disease. There is no treatment for it other than surgery.  An ingenious method invented by a Japanese surgeon, known as the “Kasai” procedure, clears the obstruction by attaching the small intestines directly to the point in the liver where the bile drains.

A Filipino surgeon performed this on Erin when she was barely three months old.  Not everyone is helped by this procedure, and half of those who are will still need a liver transplant, ideally before their fifth birthday.  But even with the relief offered by Kasai surgery, the life of a biliary atresia child is far from normal.  Bacterial infection of the ducts is bound to recur, causing further decline in liver function. Every episode of this infection, called cholangitis, requires hospitalization.  It is often marked by severe bleeding, thus necessitating blood transfusions.  This is where one-year-old Erin is at the moment.

Last week, from the small glass window of the hospital’s ICU, her eyes lit up when 9-year-old Katkat brought her a toy.  The precious smile that spontaneously formed on the face of this ailing child made everything else in the world irrelevant. It is the one reason her parents never give up.

Until last month, they had looked forward to an extended medical trip to Taiwan, where Ria was supposed to donate a portion of her liver to her daughter.  On further study, however, the Taiwanese doctors discovered that the child would need not a portion but a whole liver, complete with the plumbing system.  This can only be sourced from a cadaveric donor, which means being put on a waiting list governed by a complex priority system.  The waiting could be indefinite.

When my own granddaughter, Julia, was Erin’s age, I must have written three or four indulgent columns about her.  I documented every step of her awakening to the world, and captured everything I could from the gradual unfolding of this child’s sensibility.  I was awake every time she had asthma attacks, wishing I could do the breathing for her.  She is now a lively six-and-a-half-year-old, and this summer has been especially wondrous for her.  She swam with the whale sharks in Donsol and gazed at millions of fireflies in the dark night from a bridge in Pilar, Sorsogon.  She has learned how to ride a bicycle and to skate on ice.  She sits beside me at mealtimes.  I have memorized almost all her habits, and have even learned to appreciate the dense wisdom of Patrick, her favorite SpongeBob character.

It has taken me this long to realize that it is for the little children of this country that we don’t stop striving to build a better nation. It is for our children and grandchildren that we build the future. No other goal, to my mind, can stir in us the same will to greatness that fueled our ancestors’ struggle to create a free nation.  It is what links us in solidarity to the unbroken chain of generations stretching from the distant past into the future.  The countries that are worth something today became worth something because they built for the next generation.

Which brings me to a final point: For all the negative things we associate with the Marcos years, there is no way we can ignore the medical institutions that were built under the regime. The National Kidney Transplant Institute (NKTI) is one of them – a world-class facility staffed by among the world’s finest doctors and health professionals.  They perform kidney transplants in this hospital on an almost daily basis, and now they have also formed an expert team for the more delicate liver transplants.  Because of this, there is hope for children like Erin right in our own country.  May she have many more birthdays to come!


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