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“You are all heaven-sent genies,” Mhelody Lobo Rodriguez says to HCA Medical Director Dr Chong Poh Heng and HCA Star PALS Palliative Care Nurse Poh Ya Nee. “You make wishes come true!”
It is every parent’s wish to see their child grow up, happy and well. For Mhelody and Perry Maghigad, these simple hopes were thwarted when their baby girl, Elijah Sophia Rodriguez Maguigad, was antenally diagnosed with Edwards syndrome.
Despite the bleak prognosis for babies with Edwards syndrome – only 5-10% of babies with the chromosomal disorder live beyond the first year – the couple was determined to continue with the pregnancy.
“As a mother, I think it is a test of faith,” Mhelody shares. “We wanted to see Elijah, to let her feel that we love her deeply.”
The months before Elijah’s birth on 21 June 2019 was fraught with a myriad of emotions, spanning apprehension, hope and anticipation. Curious about the condition, Mhelody had taken to Google to find out more. The images of physical deformities and abnormalities filled Mhelody with dread.
Baby Elijah at two days old.
On the day of Elijah’s arrival, Mhelody and Perry were irrevocably moved by the sight of their baby – a tiny, beautiful girl with delicate features. But their joy was short-lived.
There was more devastating news to follow: baby Elijah was also diagnosed with esophageal atresia with tracheoesophageal fistula (a condition in which the food pipe is not properly connected) and congenital cardiac disorder. Surgery to repair the malformation was not feasible as it was extremely unlikely that Elijah would survive the procedure.
Knowing that Elijah would die within days, Mhelody and Perry made the brave but difficult decision to bring her home.
The family was referred to Star PALS shortly after Elijah’s birth. Not being fully aware of what the Star PALS service entails, Mhelody and Perry were surprised by the outpouring of care and support they received.
Dr Chong and Ya Nee examine Elijah.
“We feel so blessed and overwhelmed,” Perry says. “We were cared for from the start to the end.”
On the first home visit, the Star PALS team, together with Portraits from the Heart volunteers Kelvin and Shu Hui, showed up at the family’s residence. Kelvin and Shu Hui’s daughter, Kaelyn, was under the care of Star PALS before she passed on in 2015. Similarly, the Portraits from the Heart volunteer group had helped to capture family portraits before Kaelyn’s passing.
Inspired by the work of Portraits from the Heart, the couple subsequently decided to volunteer with the group, lending support to other families like Mhelody, Perry and Elijah.
With the help of Portraits from the Heart, Mhelody and Perry had the opportunity to take a family portrait with Elijah.
It was a day that Mhelody and Perry would never forget, as Kelvin and Shu Hui prepared the family for the photoshoot, from makeup to creating imprints of Elijah’s little hands with paint.
The gentle and steadfast support from the Star PALS team reassured Mhelody and Perry in a time of anguish, guilt and sadness. Not being able to feed their newborn ran counter to every parent’s natural instinct to nurture their offspring and filled them with guilt.
An idea suddenly occurred to Dr Chong then: to dab small amounts of honey and water on Elijah’s inner cheeks and tongue, even though only about 20% of the honey is absorbed. “Honey is tasty, nutritious and it stays in the mouth,” Dr Chong explains.
It was an ingenious idea that brought comfort to all. “Elijah really loved the honey,” Mhelody shares.
A day after the first visit, Mhelody and Perry shared with Ya Nee, their wish to return to the Philippines so that their elder son could meet his sister. It was a gutsy decision fraught with uncertainty – there was a chance Elijah would pass on en route to the Philippines and leave Mhelody and Perry mired in complex customs regulations, exacerbating an already difficult situation.
Ya Nee immediately got down to preparing the necessary medical documents for the couple, while they scrambled to secure travel documents for Elijah. “I called Dr Chong and said, ‘Please put your electronic signature on the medical certificate immediately!’,” Ya Nee laughs.
Proud father Perry cradles his newborn.
“Ya Nee shared all the possible scenarios that could happen mid-flight and how we should handle them,” Perry says. “It gave us courage and reassurance to bring her home.”
Thankfully, the flight home was uneventful. “Our family was so happy when we arrived,” Mhelody shares. “There were no tears – everyone cooed over how beautiful and cute Elijah was.”
Elijah passed on a day after returning to the Philippines. She was just five days old. “We remember her as a brave girl, not the condition she had,” Perry says. “To us, she’s a miracle baby.”
“We were so touched when we received flowers from Star PALS, even though we had only met twice,” Perry says.
Mhelody and Perry’s elder son holds his baby sister for the first time.
Unable to comprehend the meaning of death, their five-year-old son has repeatedly asked where his sister is. “I told him, if people ask where your sister is, just say ‘Baby Elijah is now an angel’,” Mhelody shares.
Today, kindness has come full circle. Moved by the overwhelming support they have received, Mhelody and Perry decided to share their story, in hopes of encouraging other parents who are in similar situations. “When they google ‘Edwards Syndrome’, I hope they see the brief but beautiful life that Elijah has lived,” Mhelody says. “Accepting reality is not easy, but it is important.”
