This Mom Gave A Piece Of Her Liver To Her Son, 'May Takot, Oo. Pero Walang Doubt Kung Bakit Ako'

As first-time parents, we know all too well the heartbreaking feeling whenever our child is sick. How much more when you find out that your firstborn child has a rare disease? That he is the one in 10,000 and there is no cure?

In an exclusive interview with Smart Parenting, Ace and Naomi Ruth Acosta from Quezon City shared the liver transplant journey of their firstborn son, Zechariah Ace. Theirs is a story of faith in God, in their community, and in each other as they go through the struggles of parenthood even after the surgery.

Finding out about the disease

Barely a year married, Omi gave birth to Zeke on July 10, 2016. "The usual naman, dumaan naman siya sa newborn screening, okay naman lahat as we thought. Nakalabas kami after 3-4 days from the hospital nung na-emergency CS ako sa kanya. Syempre, all excited, kasi unang anak, unang apo siya sa both sides," Omi, 37, said.

"The first three months, sa tingin namin as newbie parents, okay naman siya. Pero apparently, hindi pala." During Zeke's third month of routine checkups with his pediatrician, Zeke was diagnosed with liver disease. 

"Prior to that, napansin namin na umiitim siya. Joke pa nga namin, "Ay, nagmana kay Daddy (grandfather)."

"Nung ika-third month niya, kinapa siya, matigas na yung tiyan. Kinapa yung liver, parang matigas," she said.

Right then and there, their doctor decided to confine Zeke and do some work-ups in the hospital. Omi had just returned to work after her maternity leave. 

"Ang suspected was hepa or biliary atresia. Sabi ko, "Ano yun?" said Ace, 34. "I had to Google."

Omi said, "Hindi ko fully alam kung ano yung biliary atresia, pero may relative ako who had that, pero alam ko, he fought for his life during that time."

Biliary atresia is a rare disease of the liver with no known cause. It only happens in 1 in 10,000 babies. "The only cure actually is a liver transplant, which should happen within two years. Doon na nag-start, nagbago ang life for us." Ace said.

At that time, a liver transplant is not a normal procedure in the Philippines. The first operation here, according to the couple, was unsuccessful. Thus, they were eyeing to have the procedure done in Taiwan. The cost of operation was around P4-5 million, and they only had 21 months to raise that amount for Zeke's operation to take place. 

"Bukod sa financial target namin, yung health din talaga ni Zeke. Yung prayer namin talaga, sana makayanan, sana umabot kami," Omi said.

Every month since Zeke was diagnosed, he was in and out of the hospital.

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The strength of a mother

As a couple who's just starting to build their family, this became their lifestyle, "We live each day wholly dependent kay God kasi hindi namin alam anong mangyayari bukas."

Ace said naturally he was supposed to be the donor, "To be honest, ayoko na si Omi [yung donor]. Ako physically strong, si Omi emotionally strong, pero physically vulnerable. Meron siyang hyperthyroid. Pinilit ko sa sarili kong ako. Nag-gym pa ako."

However, after some tests, it was found that Omi and Zeke have the same blood type, "So mas compatible yung liver nila. Mas high yung chances na walang rejection, maging successful yung operation," Ace said.

"We live each day wholly dependent kay God kasi hindi namin alam anong mangyayari bukas."

He added, "To be honest, hindi ko kaya na silang dalawa. Hindi ko ma-imagine yung emotions na mararamdaman ko na pareho silang papasok at parehong may risk. Although inaassure naman kami na wala masyadong risk for the donor, pero siyempre iba pa rin yung feeling." In fact, Ace said, during that time, they were advised to look for another donor to lessen their fears.

With the decision that Omi will be the donor, she had to resign from her job, "Nung moment na yun, bilang nanay, go lang. Kung ako, ako. I will prepare physically, emotionally, and spiritually. Definitely natakot, pero yung doubt na dapat ba ako? Sa akin, wala." 

Ace confessed, "To be honest, nagtampo ako kay Lord. Lalo na nung na-diagnosed si Zeke. May point ako na, "Lord, mabait naman ako. Naglingkod naman kami." Pero during that time, ni-re-rebuke na din ako ni Lord. Lumakas yung faith namin kay God. Itong trial na ito, it improved us as Christians, as parents, and yung relationship namin as mag-asawa and with our family and friends."

Operation day

By doing all kinds of fundraising activities, they finally reached their target amount for the operation with the help of a lot of people. May 8, 2018 was the day they prayed for.

Omi recounts, "Sabay kaming pumasok sa operation room, buhat ko siya. Una munang sinedate si Zeke, siya muna yung in-anesthesia para makatulog, then ako na. Nung moment na yun, sabi ko, "Lord, i-surrender ko na ito sa'yo." Kumakanta lang ako ng worship songs hanggang sa makatulog ako. Pagkagising ko, ang dami ko nang mga tubes."

Not the end

After their successful transplant, Omi shared the trials didn't end there. During Zeke's recovery, he acquired cytomegalovirus, or CMV, which is a concern for people whose immune system is compromised. "Sa totoo lang, yun pa rin yung trauma ko. Hindi ko trauma yung day ng transplant, kasi it's a day of celebration. Ang pinaka-battle ko talaga spiritually and emotionally is nung nagka-pneumonia siya. Nag-50-50 siya." 

"Reminder din siya for us na the battle is always the Lord's. It's not ours."

Zeke had to be intubated. "Yun yung moment ko na, Lord, wag naman. Kasi throughout the journey, wala sa mind ko na mamamatay si Zeke. Pero during that moment, dun talaga ako nag-beg kay Lord na, sana po mabuhay pa yung anak namin."

Ace confessed, "Nung time na yun, suko na ako. Ayoko na naghihirap yung anak ko. Kunin mo na. Pero dun ako bumilib kay Omi. Pinagalitan niya ako. Sabi niya, "Ano ka ba! Yung anak mo nga lumalaban, laban din tayo."

How is Zeke now

When asked if Zeke remembers anything from his operation, Omi said, "Wala siyang maalala. Pinapakita namin yung mga videos niya, may big scar din siya, tapos nireremind namin siya na "Oh, dahil yan si Jesus yung nag-save sayo, siya yung nagbigay sa'yo ng new liver through Nanay."

Zeke is now 6 years old, takes maintenance meds, and undergoes routine tests every three months. Recently, his blood test and liver ultrasound results are okay. "Grade 1 na siya, homeschooled siya kasi medyo hesitant pa kami i-expose siya." 

"Nireremind namin siya na "Oh, dahil yan si Jesus yung nag-save sayo, siya yung nagbigay sa'yo ng new liver through Nanay."

His interests are countries and flags of the world, math, planets, and parts of the body. "Pag meron siyang na-interest na bagay, grabe talaga, mag-spend talaga siya ng days and hours matutunan yun, panoorin yun paulit-ulit."

"Pagkagising niya hanggang pagkatulog niya, non-stop talaga siya mag-salita. Napaka-active niya," Omi shared.

Ace said, their dilemma now is balancing how Zeke can enjoy his childhood without risking his health. Their family was not spared from the COVID-19 pandemic. They caught the Delta variant of the virus.

Nevertheless, the struggles as parents never end, but they are taking it one day at a time. Ace recently completed his master's degree, Omi has returned to work, and they were blessed with another child, Kari Grace.

"Being parents give you extra motivation to excel in whatever you do. Hindi na yung sarili mo yung dala mo. Dala mo na yung pamilya mo. You want to leave a legacy to your family, to be a role model to them. Lalo na nag-aaral si Zeke, nag-aaral ako that time, gusto ko makita niya na nag-aaral ako mabuti para mag-aral din siya ng mabuti," Ace shared.

When it comes to their parenting styles, they also struggled to meet halfway for Zeke. Omi strives to apply gentle parenting, while Ace is more on the traditional side. Omi admits, although they love Zeke so much, they are just like any other parents. "Ako talagang nagsa-snap din ako sa kanya. Matanong kasi talaga siya. Very strong-willed."

The role of the father

Ace works as an Intellectual Property (IP) consultant in an international firm, while Omi works in a pharmaceutical company in Mandaluyong. They currently live in San Juan, where Omi's mother helps them out in homeschooling Zeke on weekdays. 

Omi said Ace plays a crucial role for her to be able to go through all of their struggles by being her accountability partner. "Nakakatuwa na tumutulong talaga siya sa pagpapalaki sa kids. Kasi yung old school na pag tatay ka, work ka kasi provider ka. Pero siya very hands-on siya. Until now, hindi kumpleto yung routine niya kung wala siyang time to spend with the kids. Malaking parte talaga yun. Pati yung mga chores, tumutulong din siya. Nag-go beyond siya sa traditional role of being a father."

Ace said, "I'd like to correct that. Ang role talaga ng father ay yun. Being a provider is just the minimum. Being a father is more than being a provider. Madami akong sablay sa parenting style. Pero si Omi, siya din yung accountability partner ko."

Secret to a strong marriage

The couple shared that they try to go on a date lunch at least once a week. "The foundation talaga of a family is, siyempre si God, and then the marriage," Ace said.

He puts it firmly, "Magkakaproblema talaga eh. Pero dapat solid kami. Tsaka dapat unified yung mga decisions namin, approach sa parenting, kaya important na we date kasi doon lang namin napag-uusapan yun. You keep the romance din. Yun yung investment namin sa marriage."

'Kapit lang'

If they could give a message to their younger selves and to other first-time parents, Ace said, "Ipasa-Diyos lang. Di ko alam paano namin na-survive. Hanggang ngayon, tinatry ko iinternalize kung paano namin na-raise yung ganung kalaking pera. Literally, it's a miracle. Kung may message ako sa sarili ko, keep the faith. Trust in God's timing, provision. Don't lose your character kasi He will really give you whatever you need, and more than what you need. Kapit lang."

Omi meanwhile said, "Ang sasabihin ko siguro, Omi, watch out mo yung color of the wiwi ng baby, that if it gets really dark, alarming na pala siya. Yung stool, kapag yung color niya naging pale, parang ash gray to white, liver problem na pala yun." 

She added, "Reminder din siya for us na the battle is always the Lord's. It's not ours. We can only do so much, but at the end of the day, the Lord planned it for us."

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