Teenager Ofelia Reyes was born with a protuberant, midline fleshy mass at the junction of her lower back and buttocks. When her parents sought consult in PGH during Ofelia’s first month of life, the mass was assessed to be a myelomeningocele.
In this condition, part of the spinal cord and some its nerves, which provide sensation to and move the lower limbs, are exposed on the skin surface because of failure of the bony spine to develop completely. The parents were advised surgery to prevent the mass from rupturing and causing recurrent meningitis, but because of financial constraints, the patient was—as government physicians are wont to write in patient charts—lost to follow up.
She returned to the outpatient clinic 14 years later, this time accompanied by her grandmother who had long taken the responsibility of being her guardian.
“Eto po ‘yung mga papeles niya noon, Dok,” the grandmother said as she handed to me yellowing copies of a clinical abstract and a discharge summary. The forms were typewritten, filled out and signed by an intern and a resident, whose names I did not recognize. Perhaps the intern left the country after graduation. Perhaps the resident never graduated from residency. Both never to be found.
“Bakit ngayon lang po kayo bumalik, Lola?”
I just could not resist asking the question.
“Ngayon lang kasi kami nagkapera, Dok. Gustung-gusto na po kasi niyang ipaopera ‘yung bukol niya.”
Trying to suppress a giggle upon hearing this reply, Ofelia gave me a big smile. Her eyes, framed by the gentle bouncing of the curls of her hair, could not conceal hope and happiness.
“Talikod ka saglit, i-examine lang kita,” I said and she obliged.
Grandmother pulled down her diaper and I examined the lower back mass. Measuring seven centimeters at its widest diameter, its center was raw and lacking thick skin. I was relieved to find out that except for the muscles that flex and extend the ankle (which had little motion), the rest of her muscles only had slight weakness, allowing her to walk and run on her own. However, she had no voluntary control of urination or defecation. Hence, the perpetual need for diapers.
It was easy to deduce why the family would want surgery only at this time, more than a decade after the initial consult. Up until now, Ofelia had managed to fit in with her peers. She could do her daily activities with no assistance. She went to school and made friends with children her age. Except for having to wear a diaper every day, Ofelia felt and acted normal. Since her family did not have money, treating the concealable, seemingly inconsequential back mass was least of their priorities.
But Ofelia had reached adolescence, and understandably, she was becoming more conscious of her self-image, how she looked, and how others perceived her appearance. She probably got teased about her lump in class. I could imagine her wanting to be able to sit on a chair, without having to worry about the big lump pressing on her lower back. With her jovial disposition, perhaps she would even want to wear a two-piece swimsuit one day.
I would not want our service to lose this patient again, so I made notes on her MRI films and borrowed them, with the intention of scheduling her surgery as soon as possible.
“Ano po ang contact number ninyo para matawagan ko po kayo kapag puwede ko na kayong i-admit?”
Ofelia’s face suddenly clouded with worry.
“Lola, paano na iyan? Sabi na kasi sa iyo….”
“Eh Dok, pasensya ka na,” her grandmother interrupted. “Wala kasi kaming cell phone.”
“Eh wala rin po, Dok.”
“Ah ganun po ba?”
I felt ashamed for having asked my question. I then just gave them a sheet of paper containing instructions when and where they would look for me.
They did not come on the set date. Sayang naman, I remember thinking, but having no contact details, I could not do anything but wait.
Grandmother and granddaughter showed up at the pediatric emergency room two weeks later. Her back mass had leaked, making her highly susceptible to meningitis, forcing them to rush to the hospital once more. When I asked why they never made it to our appointment, Ofelia’s grandmother told me that they had not yet been able to come up with the money needed for operating room needs and medications.
They needed a little more time, she pleaded.
After making sure that she had no active infection, I was finally able to operate on Ofelia during this admission. “O, wala ka nang bukol sa puwet!” I told her the good news myself during ward round the next day.
“Thank you po, Dok.” She was lying on her side and her wound was excruciating, but she tried to put on a cheerful expression nonetheless. She made rapid recovery with no worsening of her muscle weakness.
I sent her home five days after the operation, but not without the realistic fear that that might be our last meeting. I instructed her grandmother on proper wound care and emphasized that I needed to see Ofelia on the succeeding Friday.
I had already developed a system of keeping track of post-op patients who would follow up in the neurosurgery outpatient clinic, and so on our set date, I repeatedly asked the nurse to call out her name on the microphone: “Ofelia Reyes! Ofelia Reyes! Pasok po sa room 206!”
There was no response.
At the end of the afternoon, I had accepted, as if inevitable, that my patient stood me up once more. Desperate, I reviewed her records and was surprised to see a cellular phone number indicated in the contact details. I sent a message (“Sa PGH po ito. Bakit hindi pa po nagfo-follow up si Ofelia Reyes?”) and tried to call, but to no avail.
Until two weeks later, I was notified by my junior resident, “Sir, naghihintay po sa inyo sa ward ‘yung post-op ninyo na si Reyes.”
I had just spent 12 hours doing two operations the entire day. I was tired. Ofelia was sitting on a wheelchair at the nurses station, with a look of apprehension on her face. Her grandmother was standing beside her.
“Bakit hindi po kayo nag-follow up, Lola?”
My voice was stern and dry.
“Dok, pasensya ka na, binaha kasi kami nung bagyo. Nung bumalik kami para magpa-schedule ulit, hindi na kami umabot.”
Once more, I felt ashamed for having asked my question.
“Tara, dapa ka dito sa stretcher,” I said to Ofelia. “Tignan natin ang sugat mo.”
The most medial portion of my incision had failed to heal properly, but give it a few days and the skin would thicken on its own as long as it did not infect.
“Kamusta ka naman?” Having just received a self-reprimand, my mood was beginning to lighten.
“OK naman po…. Nahihiya nga ako sa iyo, Dok,” Ofelia said as I was removing the sutures on her back.
“Gusto ko sana bumawi, pero wala kaming pambili.”
She said it with the sincerity of a kid praying for a loved one’s recovery from terminal illness. Now, I was the one who could not suppress a giggle.
“Naku, huwag na! Basta mag-follow up ka lang.”
I applied antibiotic ointment, which I had to get from my stash in the operating room because they only had enough money for their fare going home, and secured the sterile gauze with a Micropore tape, this time taken from excess ICU supplies.
“Ingat na lang po pauwi,” I said before leaving.
From the ward corridor, I heard my patient shout, “Thank you po, Dok. God bless po!”
I grinned and crossed my fingers, hoping I would see Ofelia on time, next time.
Ofelia’s condition (myelomeningocele, a form of spina bifida) is associated with maternal deficiency in folic acid during the first trimester of pregnancy. Volunteer Youth Leaders for Health Philippines is launching a social media campaign for #FolicAcidPH on Monday, July 18, 2016 to increase awareness of Filipinos on the importance of folic acid in preventing neural tube defects at birth.
Read more about the campaign here: bit.ly/folicacidph