• This Couple Is Turning Their Grief Into Gratitude After the Death of Their Baby

    A mom talks about her loss and how he became the 'boy who will always live.'
    by Karla Caparas .
This Couple Is Turning Their Grief Into Gratitude After the Death of Their Baby
PHOTO BY courtesy of Karla Caparas
  • It is not that easy to have a baby — at least in my experience. 

    My husband Renan and I were high school classmates, but we were not high school sweethearts. We became boyfriend-girlfriend when we were already in our 20s and got married four years later on May 1, 2010. I became pregnant a month after our wedding, but it turned out to be a blighted ovum and had to do an emergency procedure (D&C) on my birthday, June 26. That was six years ago.

    I consulted different ob-gyn doctors, underwent numerous lab tests, been pricked and prodded with needles too many times to count, and even visited hilots to check if my uterus is aligned. Hearing “We don’t know why” my husband and I couldn't conceive, it was harder to swallow than a “Yes, you are the one with the problem.” 

    That is until Nathan came and changed our lives forever.

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    Nathan was born on April 25, 2017 at 1.42 kilos and was transferred to St Luke's Medical Center QC IMCU from Bulacan and stayed there for 28 days.
    PHOTO BY courtesy of Karla Caparas

    Our baby boy Nathan Rafael Caparas was a 33-weeker IUGR baby (Intrauterine growth restriction refers to "a condition in which an unborn baby is smaller than it should be because it is not growing at a normal rate inside the womb"). He was a rock star: no oxygen, just antibiotics for suspected sepsis, and just needed to put on some weight before getting discharged. He had PDA (Patent Ductus Arteriosus, a small opening in the pulmonary valve that is common in preemie babies), but his neonatologist said he was given medication for it, and no murmur was heard. We were optimistic he would get through

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    However, in his fourth month (2 months actual age), we had to rush him to Philippine Children’s Medical Center (PCMC) emergency room because he was not breathing correctly. It turned out that his PDA grew larger, affecting his lungs. He was rushed to the PCMC PICU and had an emergency PDA ligation (an emergency surgery to close the opening of the pulmonary valve). However, because of the prolonged time, his left lung was already damaged and was diagnosed with Chronic Lung Disease — he had to be on oxygen support. His EEG also confirmed he suffered from focal epilepsy, so he was given anti-seizure drugs.

    For one year and four months of his life, we were in and out of the hospital. He was feeding through a nasogastric tube (NGT) while doing therapy for swallowing. On his 10th month, he had G-tube insertion in his stomach as he was further diagnosed with dysphagia or difficulty in swallowing. He had scheduled feeding through his G-tube every three hours ran by feeding syringe. We had weekly consultations with his doctors in neurology, pulmonology, and gastrology in PCMC. We had physical and occupational therapy sessions at home every once to twice a week. We learned how to read laboratory results, compute the exact amount of anti-seizure medication, use the suction machine, and stabilize oxygen requirement. We felt like we became doctors and nurses overnight.

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    Despite one bad news after another, we never faltered with hope. Nathan was fighting, and so were we.
    PHOTO BY courtesy of Karla Caparas

    It was a running joke in our family that we could have built a children's ward in PCMC with all the bills we accumulated. But our journey was never a joke. There were times we cried because of frustration, fear, and hopelessness. We asked God why Nathan, why us.

    In spite of the challenges, there were positive ones. Nathan was steadily gaining weight; he loved sleeping in my chest and listening to lullabies. He was no camera-shy boy, always ready to take a picture with Mommy and Daddy.

    Financial issues piled up, but we were so fortunate that so many people helped us, from our immediate families and friends who were there from day 1 to those we even haven't talked in a long time but came through the minute they found out about Nathan. His doctors and nurses in PCMC treated us with care. With all the challenges we faced, we were still blessed to have good Samaritans in our lives. We will be forever grateful they were able to lengthen Nathan's life.

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    My son was gentle and brave — the bravest boy my husband and I have ever met.
    PHOTO BY courtesy of Karla Caparas

    Nathan drew his last breath on September 17, 2017. His final diagnosis was severe pneumonia due to Chronic Lung Disease. No words could describe how we felt that day. It was as if the world stopped spinning. There was no available ambulance, so we carried his body all the way from PCMC to Bulacan for interment. We savored the moment of hugging and kissing him for the last time.

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    In the midst of our sorrow of losing Nathan, we started our passion project House of Nathan three months after Nathan’s passing.

    We started providing hats to the Philippine Children Medical Center Neonatal Intensive Care Unit (NICU) and Newborn wards and to the National Children’s Hospital (NCH) together with Bairns Clothing. House of Nathan also gives out preemie diapers to some preemie babies still confined in NICU.

    House of Nathan is our family's way of honoring Nathan's short but meaningful life. It is our way of paying it forward to all the people who helped us during our challenging but rewarding journey. We know how hopelessness feel. We know how difficult and challenging a preemie journey is, and we want to help in little ways that we can.

    Our Hats for Nathan project provide crochet baby beanies to government NICU wards.
    PHOTO BY courtesy of Karla Caparas
      

    This piece was submitted by Smart Parenting reader Karla Caparas. Get in touch with House of Nathan on FacebookInstagram or The Purple Hands Preemie and NICU Support PH (TPH) Facebook group.

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