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‘My baby cried herself to death’

By KRIZETTE CHU

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On April 21, at 8 a.m., Jill brought her baby Lyanna to the Davao Doctor’s Hospital’s emergency room after Lyanna’s cough wouldn’t go away even after a 10-day course of antibiotics.

Jill was worried.  Lyanna was a special case—she was born with a congenital diaphragmatic hernia, a birth defect where thediaphragm, the muscle that separates the chest from the abdomen, fails to close during prenatal development. This means that Lyanna’s stomach, spleen, part of the intestines, and liver have moved into the chest area, impacting her lungs’ development. Lyanna only had one lung, plus due to her surgery,she had pulmonary hypertension and bronchopulmonary dysplasia. Lyanna was also born with VSD, or ventricular septal defect, a hole in her heart.

Jill, who used to be a senior high teacher at the Ateneo, had to quit her job to take care of Lyanna, and a special night nurse was hired to take care of the baby, who was understandably fussy, clingy, and particular about her routines.

“She had a particular song, she wanted to be carried a particular way, she had particular toys she wanted to play with,” says Jill.

The seven-month old was a fighter, and hospital visits weren’t new to her and her parents Jill and Joseph Palarca. After all, she had to stay for three months in the NICU of the Davao Doctor’s Hospital when she was born in September of 2019. She has had two bouts of pneumonia—first when she was in the NICU, and the second in February, but she was doing better, at least good enough that her pediatrician in charge suggested that the child, who also had a cleft palate and was being tube-fed, should be introduced to solids so she could gain weight, enough for her to be considered for a peg surgery.

“So I introduced Lyanna to solid food, and instant baby food,” Jill shares. At first it went well, until Jill noticed an overproduction of saliva in her daughter whose tastebuds must’ve been reacting to the new tastes. And then Lyanna started having a little cough. Later on, Jill noticed that Lyanna’s cough started sounding phlegmy, which worried her as, a side effect to her condition, Lyanna had breath holding spells, in which she would turn blue from lack of oxygen—most notable when Lyanna was crying.

Coughing, or crying, could be fatal for somebody like Lyanna with all her illnesses.

The nightmare begins

“Because of the lockdown, Lyanna’s regular checkups and vaccination were put on hold by the doctors,” Jill shared. “They were all unreachable when we wanted to consult.”

At the emergency room, they ran some tests, which showed that Lyanna had pneumonia. Jill was told that, following protocol, Lyanna would be considered Covid-19 suspect, and they had to move her to the only hospital in the region that was allowed to accept patients. “But I didn’t want to move because I knew that Lyanna couldn’t have had Covid-19,” Jill says. “Due to the nature of her illness, and her weak immunity, we haven’t been out since before ECQ was implemented in the city. Her dad Joseph, who is a church minister and veterinarian, had since worked from home, and I was a stay-at-home mom. We don’t receive visitors.”

Lyanna Palarca. Photo courtesy of Jill and Joseph Palarca

Lyanna Palarca. Photo courtesy of Jill and Joseph Palarca

Due to her condition, the family’s disinfection protocols at home have always been stringent. Baby Lyanna has been in isolation since she went home. Her room is set up like a hospital, and the family knows and understands strict hygiene processes as a matter of survival.

She was counting on Lyanna’s team of pediatricians, cardiologist, and other medical personnel who knew her child’s history, in the hopes that they could explain Lyanna’s cough and pneumonia as something that she regularly had to deal with because of  her medical condition—and not, as the hospital insisted, Covid-19.

Her team of consultants, however, said there was nothing they could do, protocol was protocol, and Lyanna would have to be moved to Southern Philippines Medical Center (SPMC), in an area where other pediatric patients under observation for Covid-19 were kept.

The moment we were told that we had to be moved to SPMC, her attending physician signed off immediately even when we were still inside the facility,” Jill laments. At the hospital, Lyanna was intubated, but not hooked to a ventilator. Here, she was bagged for more than 12 hours by different medical staff, and Jill said that the technique was inconsistent, which could have proved fatal.

At 4 a.m. of April 22, the following morning—following 15 harrowing hours in the ER where the distressed Jill tried to reason with authorities to keep her child in the hospital, or at least allow her to stay with Lyanna in isolationLyanna was moved to SPMC.

Upon arrival at the new hospital, Jill would find out that the hospital didn’t know the history of her baby, that Lyanna’s casewasn’t properly endorsed, which means she would even find it even more difficult to convince a different set authorities that her baby needed her.

In the early hours of the morning, as Lyanna was being wheeled inside the isolation area of the PICU of the hospital, crying, begging for her, looking imploringly at her, Jill felt crushed. She wanted to grab her baby and save her, but things were out of her hands now.

“I knew, in my heart, that there was nothing more I could do, that I had done all the fighting I could,” Jill says. This was the last time Jill would see ever see Lyanna.

 Fighting for rights

At 9 a.m. while she and her husband were pacing at the indoor parking lot of the hospital, they were approached by a doctor and told that Lyanna went on a cardiac arrest and was comatose.

“I am very sure that it happened as soon as she got inside PICU, but we were told only at 9 a.m.,” Jill said. As a mother, sheknew for certain it was because her baby wouldn’t stop crying, and she begged the hospital to allow her to hold her baby and perhaps soothe her baby back into consciousness. That request was denied.

Lyanna miraculously became conscious at 12 noon—and upon being told, Jill begged to see her baby. Again, this request was denied. Both her and Joseph went home, and was woken up at 8 pm when the doctor asked them to go back to the hospital. At 8:45 pm, they were told that Lyanna has passed away.

“Our challenges didn’t end there—the doctors didn’t want to give Lyanna’s body to us because protocol is, you need two negative tests to ascertain real results, but how could you do that with our baby who was already gone,” Jill asked. The hospital had the baby picked up by a funeral parlor, and the next time Jill would “see” her baby—she was inside the casket. She and her husband could not even open it. The hospital wrapped the baby in linen, and Jill didn’t even get a chance to properly clothe Lyanna in her favorite clothes.

Her baby wrapped in dirty linen, lying in a casket, wasn’t something the couple ever wanted to see. Jill says, “Things have happened so fast, and only two days ago, she was okay. I want to remember her like that.”

The next day, the results came in: The seven-month-old girl never had Covid-19 in the first place.

Jill is now speaking up because she wants the government—as it discusses SOP for what promises to be a long and arduous fight against Covid-19—to remember injecting ‘humanity’ in their protocols.  

“I feel compelled to talk because I want the Philippine government, and the Department of Health to know what this will mean for mothers like us,” she begins. “First, the umbrella issue, the standards with which the DOH or the WHO put on babies who are suspected of Covid-19. Their protocols vary from country to country, from city to city. If the doctorssuspected Lyanna of having Covid-19, why didn’t they isolate me and my husband as well?”

Lyanna was a registered PWD, and Jill says that the government must take into consideration children with special needs, specially those who need special care that go above and beyond the knowledge of medical professionals who are not familiar with a child’s history.

She also says that she believes that children become better when they feel loved and cared for by their parents. “Why don’t you allow mothers of very young children, or sick children, to be isolated with them—because these children don’t walk on their own, if there’s a source of infection it will be us, so why not allow us to be with them, and care for them?”

As the governments and the World Health Organization move to create and establish protocols, Jill says she must speak up so that her story may serve as a guiding post, so that mothers in the future, and their babies, will not suffer the same fate. “Please do not forget humanity when you are creating your protocols, when you are deciding what to do,” she says.

“My baby didn’t die from Covid-19, she died because she wasn’t given the right medication and treatment, she died because they didn’t even know her history,” Jill says. “My baby cried herself to death because I wasn’t there for her—and that’s the one thing that will haunt me for the rest of my life.”


Source: Manila Bulletin (https://lifestyle.mb.com.ph/2020/05/02/my-baby-cried-herself-to-death/)

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