The protocol heals or kills?

“#JUSTICEFORLYANNA” - this is the outcry of parents Jill and Joseph John Palarca for their daughter Lyanna Joie.

“Hindi ako pinayagan na makapasok dahil strict protocol daw. Hindi ko man lang nahawakan at nakita ang anak ko for the last time, ni hindi man lang kami nakapagpaalam ng maayos sa kanya (I was denied entry to see my child inside the facility due to strict protocol. I was not given the chance to touch and see my daughter for the last time. Worse, we were not able to personally say goodbye to her),” grieving mother Jill said in a phone interview.

Lyanna, a seven-month-old baby with congenital diaphragmatic hernia (CDH), passed away on April 22 at the Southern Philippines Medical Center (SPMC) in Davao City. She was initially tagged as a suspected coronavirus disease 2019 (Covid-19) patient after acquiring pneumonia, but was later on tested negative for her first swab test.

For Lyanna’s untimely death, her parents raised the issue of accountability and protocol reform. They claimed their daughter was not given appropriate and enough medical intervention that matches her delicate condition; and that the strict standard protocol is inhumane for separating a sick person with disability (PWD) child from them during treatment.

“We are raising this issue not to simply attack the doctors, nurses, and the hospitals. We are concerned that because of this protocol, our healthcare system has forgotten about compassion and humanity. Isn’t it that their main duty is preservation of life? This protocol kills more than it heals,” Jill said.

She added that if she was only allowed to sign a waiver of liability and wore personal protective equipment (PPE) inside the facility to help her baby’s condition, Lyanna could have been saved.

Understanding Lyanna’s special case

As a CDH baby, Lyanna had lived with one working lung. She was also born with ventricular septal defect or a hole in her heart. But she survived three months in the Neonatal Intensive Care Unit (NICU) in Davao Doctors Hospital (DDH); and endured septic shock from a major surgery, severe pneumonia, and several code blue episodes.

Given her condition, she is susceptible to respiratory diseases. Under home care, her bedroom mirrors a hospital room where everything is sterilized and sanitized.

People who come near her are required to wear a gown, mask, and hair net.

When the Enhanced Community Quarantine was implemented in Davao City due to Covid-19, Lyanna’s medication was heavily affected. Her regular check-ups, vaccination, and other interventions to keep her well were interrupted.

Telemedicine was advised - a new medical norm that clearly works for the rest of the population, but not for Lyanna.

Her cough has worsened in a span of 10 days despite taking her prescribed antibiotics. Jill and Joseph were left with no choice but to rush her to DDH, a usual scenario for the family for the past seven months, only this time, a pandemic has loomed.

On Tuesday noon, April 21, Xray results of the baby showed she has pneumonia again. But this is not the first time for Lyanna. She already survived two pneumonias – one when she was still in NICU and second was last February.

Under normal circumstances, DDH will treat her with the usual medication and type of ventilator that worked for her for the past few months. Her set of doctors will do hands-on monitoring, and her parents will be allowed to stay by her side every treatment and operation. But the pandemic did not allow this to happen. Lyanna was then put to a more risky situation.

Jill said even though her daughter just had a typical pneumonia due to her CDH condition, she was haphazardly labelled as Covid-19 suspect and was forced out of DDH to be transferred to SPMC, a Covid-19 facility – because of protocol.

“She’s forced to be in an isolated room where she received medical care that doesn't match her special needs. What made it worse was that she was separated from us, which added to her distress,” she said.

“Lyanna is a special case and applying the protocol to her is inhuman. She has one lung and when she cries hard, she will develop a Hypercyanotic spells wherein she holds her breath at any slight discomfort. She usually cries so hard when she wakes up and doesn’t see me and her dad. It is quite scary for her to be separated from me all of a sudden, deliver her to a facility with people wearing PPE who looks like an alien for a baby like Lyanna,” the mother added.

This pandemic has led the Department of Health (DOH) to impose stricter health protocols in all healthcare facilities in a bid to prevent the spread of Covid-19. A protocol, according to Jill, that became heartless and unreasonable.

But what exactly is the standard protocol in handling patients during this pandemic?

The Covid-19 protocol explained

The DOH national protocol states that any person - adult or child, with fever, cough, or any respiratory issues related to the highly-infectious disease will be admitted only at Covid-19-accredited hospitals or facilities and be treated as Covid-19 suspect. The patient can only be transferred to other healthcare facilities if tests turned out negative for at least two –three times.

Lyanna was transferred to SPMC as this is the only facility accredited by the health department to treat Covid-19 related patients in Davao City.

In an April 15, 2020 Joint Administrative Order No. 2020-0001 of DOH and Department of Interior and Local Government, it stated that pursuant to Section 6 (e) of Republic Act No. 11332 and other applicable laws on quarantine and isolation “authorized health personnel from the DOH and its counterparts in local government units have the statutory and regulatory authority to enforce rapid containment, quarantine, and isolation as part of Covid-19 prevention and control measures.”

The standard protocol also dictates that while the patient is under the isolation facility, access shall be limited only to healthcare workers observing standard precautionary measures. Family members or any caregiver shall be denied access to the patient to prevent spread of the virus.

“The protocol of the hospital is we do not allow anybody to get in because we do not want anybody to get contaminated especially inside a place considered a critical area. We just do not let anybody get in,” Dr. Marie Yvette Barez, SPMC’s Infectious Disease Specialist said in One Davao virtual presser on April 27.

DOH undersecretary Maria Rosario Vergeire also explained that extra precautions must be observed in Davao City as local transmission is confirmed here. She added: “Standard protocol din po na limited lang din po dapat ang contact ng isang pasyente at ang kanyang bantay sa loob ng isang ICU (Intensive Care Unit) upang maiwasan ang pagkahawa ng mga pasyente na maseselan na po ang kalagayan. (Standard protocol dictates that contact between the patient and the caregiver or watcher inside an ICU shall be limited to avoid infection especially when the patient is on a critical stage).”

But these two separate statements from SPMC and DOH are contradictory. SPMC says the protocol states contact between patient and parent should be denied but DOH, for its part, said it is only limited, not totally barred.

Jill was denied request to see her child’s dead body

“I beg for them to let me see my child’s body at least for the last time. But our request was denied again. Her test result was out after she died and it says negative. But despite testing negative, DOH protocol dictates that she cannot be given a proper burial,” Jill said.

SPMC explained that they cannot categorically clear the child from the virus as they only get to test her once. Thus, Jill and Joseph were not permitted to see their daughter’s body. Instead, they received a small sealed metal casket with Lyanna inside it.

“We have several patients, we tested them two to three times before their test results appeared positive. Unfortunately, this patient (Lyanna) was tested only once, it was not repeated because the patient died the next day. Yes, she tested negative but we cannot be 100 percent sure that she is really negative,” Barez clarified.

Barez added that the child is still considered a probable case or a patient under investigation with inconclusive test results.

According to DOH Memorandum No. 2020 - 0158 for the proper handling of the remains of suspect, probable, and confirmed Covid-19 cases, it stated under general guidelines number one (1) that “all suspect and probable Covid-19 patients who died with pending or inconclusive test results shall be handled similar to a confirmed Covid-19 case.”

Moreover, the memorandum’s section D number one (1) stated that burial or cremation shall be done within 12 hours after death. It added under number five (5) of the same section that in burying, the remains shall be placed in a durable, airtight, and sealed metal casket and shall not be taken to any place of public assembly and viewing.

However, if Lyanna’s parents were indeed denied from seeing their child’s dead body, SPMC has violated the same memorandum which says under specific guidelines that “if the family of the patient wishes to view the body after removal from the isolation room or area, they may be allowed for as long as standard precautions are strictly followed.”

Standard precautions means the family should wear appropriate PPE such as gloves, masks, apron/gown, and eye protection gear.

SunStar Davao asked SPMC to comment on this specific matter but no response has been received as of this writing.

Proper medication on question

Jill has strongly claimed that their child was not given appropriate medication that matches her needs as a patient with CDH.

“It grieves us that after overcoming many medical battles, she died because she did not receive the right care for her condition. I found out that SPMC had no knowledge about my daughter’s medical history when she was transferred. I know because I asked them that day. I personally explained to the resident doctor my child’s condition. They are only aware that she has pneumonia therefore Covid-19 suspect. That’s it,” Jill laments.

Lyanna was admitted at the Pediatric Intensive Care Unit (PICU) of SPMC around 4 a.m. on April 22. A few hours later, Lyanna had cardiac arrest and went into comatose. At 12 noon, the baby miraculously became conscious.

“My daughter is a survivor and fighter. She had several medical battles before at a very young age,” Jill narrates.

But Lyanna’s battle was cut short. The baby succumbed around 8:45 pm on that same day.

“What was not done this time? Was she given the same treatment that made her survive before? Was she put on the same ventilator that saved her life before?” questions Jill. She added they are still awaiting the hospital’s course in the ward.

Jill believes that her daughter failed to survive this time because her usual doctors were not present; the usual medication and type of ventilator were not used; she was handled by doctors who did not know of her tendencies and nuances; and her mother was not there by her side.

Barez was quick to dismiss Jill’s claims saying the child was handled with proper care by a specialist.

“It is unfair to accuse us that we did not provide the utmost care. The patient was seen by a pediatric infectious disease specialist and watched over by residents on duty that time. We assure you that the pediatric department handled the patient according to how the patient should be managed especially when there is a pandemic,” she explained.

She also emphasized the fact that the patient was placed in PICU, it means Lyanna was given the highest level of medical care.

DOH, in a separate statement, cleared that the hospitals – DDH and SPMC, have given the patient competent medical care.

“Tiwala po kami na binigyan ng karampatang atensyong medical ng pribadong hospital (DDH) and SPMC ang bata lalo na at komplikado na ang kondisyon nito (We believe that the private hospital and SPMC gave appropriate medical care to the child who is considered as a complicated case),” Vergeire said.

Meanwhile, DDH said in an email statement sent to SunStar Davao, that they stand with DOH statement on Lyanna’s case.

The fight continues

Jill and Joseph, still grieving, stand firm on their call to the government on reassessing and injecting humanity in the protocol.

“This is a call for the national government to rethink the existing protocols. We demand for better assessment and for mothers or parents not to be separated from their child especially those with special needs like my Lyanna while accessing medication,” Jill underscored.

Joseph also expressed that when doctors and nurses’ hands are tied because of rules and protocol “there is little or no hope left for children.”

“Fight for Lyanna because your child might be the one they take away next. Question these protocols that are disregarding the rights and well-being of the children we hold most dear. We are sharing her story so no other child will suffer her tragic,” the father added.

Jill also shared that after speaking up in media interviews, a number of parents reached out to her who suffered the same fate. This fight, she said, goes beyond them to a bigger purpose.

“I can’t bring back the life of my daughter anymore,” she said. “But we can save other children’s lives if we keep this fight until humanity and compassion find their righteous place in the protocol.”

Lyanna’s case shows two things: how crucial balance between strict protocol and humanity is; and how her case magnified the plight of many - this pandemic has added heartaches to families with sickly children, like Jill and Joseph, who fought hard for their child’s life. But the battle was cut short due to a protocol created by today’s pandemic.