This is part of #KaraniwangLGBTQIA, which Outrage Magazine officially launched on July 26, 2015 to offer vignettes of LGBT people/living, particularly in the Philippines, to give so-called “everyday people” – in this case, the common LGBTQIA people – that chance to share their stories.
As Outrage Magazine editor Michael David C. Tan says: “All our stories are valid – not just the stories of the ‘big shots’. And it’s high time we start telling all our stories.”
Nelson’s eldest child was born in 2008, and he remembered that the child did not undergo newborn screening. It was only when the child got sick that it was noticed that she had ambiguous genitalia, and that she had a condition that required for her to be confined in the hospital.
“Isang buwan na, nasa ospital kami sa Tondo, walang nangyayari. Nag-decide na ako na ilipat ng Philippine Children’s Medical Center (PCMC). Doon ko pa lang nalaman na ganun na pala yung sakit niya, CAH, kasi yung expert andoon at yan yung sinabi doon (We were in a hospital in Tondo for a month, but nothing was happening. I decided to move her to PCMC. That’s where I found out what ailed her, CAH, because an expert was there and that’s what was said to us).”
Nelson recalled that treatment was given to the child, but that “hindi pinaliwanag sa amin ano yung sakit. Hindi namin naintindihan (no one explained to us about the illness. We didn’t understand it).”
The child passed away; she lived for four months.
Nelson had two other children afterwards; they’re 11 and eight years old now.
FAMILY COMES FIRST
Then in 2021, his wife got pregnant again. While getting an ultrasound, the doctor had a hard time assessing if the child inside her was male or female. This doctor said that when this happens, it usually means the child is female. But “kinabahan na ako kasi parang naulit lang (I was nervous because it’s like déjà vu).”
Nelson’s fourth child was born on July 26, 2021. “Inabangan ko yung paglabas ng bata. Nagulat nga rin sila kakaiba yung ari niya. Ako naman bilang magulang, kasi alam ko na yung experience, sabi ko gagawin ko lahat para sa kanya (I waited for the child’s birth. Those in attendance were surprised because of the ambiguous genitalia. But me, as a parent, since I already experienced this, I just said I’d do everything for the child).”
Intersex-related issues started from then.
The doctor ordered that the child be identified as male. And so “labag sa kalooban namin… gumawa kami ng male name (against our wishes… we came up with a male name).”
And then two to five days after the child’s birth, the Newborn Screening Center called them to inform them that the child has CAH, and that transferring to PGH is needed. “Ang nakakainis sa kanila, sabihan kami ng ganun, pero hindi naman kami tinutulungan kung saan kami magpapa-check-up (What’s annoying with them is, they tell you the condition, but they don’t help by linking you to who to go to).”
NEVER-ENDING CHALLENGES
Nelson had to do his own research to find any pediatric endocrinologist who could help, which led him to a doctor in UST, who reached out to a doctor in Manila Doctors’ Hospital, which linked him to PGH that initially refused him and the child (supposedly because all beds were occupied then), so that he had to be linked to National Children’s Hospital (NCH). It was a meandering process just to ask for help, on top of being told to prepare ₱50,000 as down payment before being served. And yet the child was still not hospitalized.
Doctors did see the child then. Nelson said some seemed to understand the severity of the situation, telling him “not to bring the child home as the child could die”, though there were also those who just said “parang okay naman (the child seems okay).” This was even if “yung anak ko habang tumatagal humihina yung pag-dede niya. Tapos pumapayat siya. Tapos umiitim na rin yung mga labi niya (my child didn’t breastfeed as much. She was losing weight. And her lips had darkened).”
While waiting for any hospital to admit the child, they went to Manila Endocrine Laboratory (MEL) for a laboratory test. There they were told that no blood can be drawn from the child anymore, and that she actually needed to be admitted already. It was the MEL that called the National Institute of Health, which called the PGH to admit the child immediately. The very doctor who initially refused Nelson’s child became their doctor.
“Feeling ko nun mamamatay na ako. May takot. Nanginginig ako. Hindi ko na alam kung anxiety po ba yun. Di ko na alam kung ano gagawin (I felt like dying then. I was afraid. I was shaking. I didn’t know if that was anxiety. I didn’t know what to do),” Nelson said.
Karyotyping was done then, and the child was identified as female. And so now Nelson is in a quandary. “Female siya pero ang documents ay male kasi pinilit kami. Sa ngayon, sa medical records ay female, at sa birth at baptismal certificates ay male (She’s female but her documents state ‘male’ because we were forced. So now, her medical records say ‘female’, but her birth and baptismal certificates say ‘male’).”
The child got better, but this started another struggle for Nelson. The medicines prescribed by the doctors (i.e. sodium chloride, hydrocortisone, at fludrocortisone) were not readily available in the Philippines. In fact, one doctor allegedly had a “middle man” who already worked overseas and where she could buy these medicines. It also took two weeks before the medicines arrived.
Eventually, Nelson was linked to the local source of these medicines. They didn’t want to directly engage with him until he threatened to report them to the Department of Trade and Industry. And then when he asked for quotation of their prices (as requirement to get help from the DOH), they also initially refused until Nelson threatened to report them to both DOH and the Food and Drug Administration (FDA).
LACKING SERVICES
But for Nelson, even government agencies are unable to help because they do not know a lot about intersex variations. Getting the Person with Disability (PWD) ID from the DSWD was, as an example, difficult and he had to argue with “the doctor for the agency since he did not want to issue certification for a condition he didn’t understand.”
People at his LGU refused to give financial support because “feeling nila hindi malala. Bago sa pandinig nila (they feel this isn’t so ba. It’s new to them).” The Philippine Charity Sweepstakes Office didn’t approve the request for help because “hindi rin sila familiar (they’re not familiar with this).”
FOCUS ON THE CHILD
One time he had his daughter checked, a doctor (pediatric urologist) said that when she turns four years old, surgery should already be done on. “Ang sabi sa akin, mag-ipon daw ako ng ₱150,000 o lagpas pa (I was told to save ₱150,000 or even more),” Nelson recalled. But more than the money, he had issues with the surgery because “gusto ko siya magdesisyon. Malaya siya kung ano ang gusto niya (I want for her to decide. She’s free to choose what she wants).”
But this is also why Nelson said the focus is always on protecting his child. “Because there’s also discrimination,” he said, “like when neighbors find out and they say she’s either lucky or a pest. Ang iniisip ko, yung paglaki ng anak ko (I think of my child’s future). So I want to be where we’re free.” – WITH MICHAEL DAVID dela Cruz TAN
THE ORIGINAL ARTICLE APPEARED IN “I EXISTS”, A COFFEE TABLE BOOK PRODUCED IN 2023 BY INTERSEX PHILIPPINES, INC. (IXPI) TO HIGHLIGHT THAT THE ‘I’ IN THE LGBTQIA ACRONYM EXISTS, AND THAT MANY OF THEIR ISSUES CONTINUE TO BE NEGLECTED EVEN BY THE LGBTQIA COMMUNITY.
FOR MORE INFORMATION ON IXPI, OR OF “I EXISTS”, CONTACT IXPI, THE PIONEERING ORGANIZATION FOR INTERSEX PEOPLE IN THE PHILIPPINES.
