This Singaporean girl with an extremely rare skin condition has beaten the odds to survive and thrive
By
Janice Tai
, 16 February 2024
Seven-year-old Zoe knows she is deeply loved by God and her family. Photos by Samuel Ng and Janice Tai.
When his third baby was born in 2016, Samuel Ng was greeted with strange words from the delivery nurse: “Don’t be shocked, okay?”
It was both a statement of concern and a warning.
Under the glare of the light that shone on his baby in the NICU (Neonatal Intensive Care Unit) incubator, Samuel saw that his newborn daughter was encased in layers of thick, hardened skin that was so tight they pulled her eyelids and lips back.
Her eyes and mouth appeared blood-red.
“Is this mine?’ the honest thought flickered through his mind.
Then, almost as instantaneously, an overwhelming love for her flooded his being.
“I wondered whether she was feeling any pain because her skin looked so dry and shiny under the light,” said Samuel, now 44. “I thought about how I could help make her feel more comfortable.”
Genetic disorder
Named Zoe, Samuel’s daughter was diagnosed with Harlequin Ichthyosis, an extremely rare genetic disorder that causes thick and scaly skin prone to cracking and constant infections.
Ichthyosis is derived from a Greek word, ichthys, which means fish. It refers to a fish scale-like appearance of the skin.
In the past, babies born with this condition did not live beyond the first few days. Today, with medical intervention, they can lead normal lives if they are able to manage the obstacles that come with the condition.
As Samuel continued to look at Zoe in the NICU incubator, he began singing to her a song she had already heard while in the womb:
“Jesus loves me this I know, for the Bible tells me so. Little ones to Him belong; they are weak, but He is strong.”
He reflected: “On hindsight, that was the first example of how God anointed me with His spirit of love so that I could very quickly start loving and caring for her and doing whatever it took for her to get through those critical first hours after delivery.”
Tough realities
The next minutes and hours were filled with activity and decisions that needed to be made – from shifting Zoe to KK Women’s and Children’s Hospital, to being counselled about financial matters, to discussions over how to break the news to his then-wife.
But Samuel did not feel any fear or anxiety about the situation or about his daughter’s future.
“I had to trust the healthcare professionals,” Samuel said.
“But there was this security that we were in God’s hands and that whatever happened, even sickness and death, it’s never hopeless.
“Somehow inside my heart, there was no fear, anxiety, sadness, depression or disappointment, even though I had no answers and I didn’t know anything.”
The first challenge for Zoe was to survive.
The thick casing of rapidly-growing skin wrapped itself around her wrists and ankles so tightly as to constrict blood flow to the tissue in her hands. The tissue turned necrotic and, within her first week of life, her hands fell off on their own.
By Week 2, Zoe had lost her hands.
While in ICU during those first few weeks, she also had such long-running high fever that a doctor cautioned Samuel that she might not have long to live.
Besides locating the source of her fever, the doctors needed to decide whether she could be given intravenous drugs as her skin was so thick that the needles could not find her veins.
Miraculously, Zoe pulled through her two-month stay in hospital.
Home sweet home
Transiting Zoe back home was the next challenge. No one knew if she would adapt well to the change in humidity, temperature and dust levels.
In the hospital, the nurses had put eyedrops for her every 15 minutes. Every half an hour to one hour, her body was moisturised with paraffin to prevent her skin from drying out and to facilitate the shedding of outer layers of skin.
Samuel, a music teacher in a secondary school, recounted: “The healthcare team allowed me to stay beyond visiting hours till I caught the last bus home near midnight so that I could observe and learn from them how to care for Zoe.
“A few of them also went beyond their call of duty to be extremely patient and loving towards Zoe.
“It helped that the school I taught in was supportive and gave me flexible time away. It also had insurance provision for us so finances were partly taken care of.”
Zoe, at about four months old, adapting well to the home environment.
Once home, the family did their best to make Zoe as comfortable as possible by keeping to the intense regimen of round-the-clock care.
Her daily long baths alone could stretch up to three or four hours. First, they would exfoliate all the dead skin limb by limb using coconut oil, and then, they would moisturise her thoroughly with a mixture of paraffin and coconut oil.
Having to slather her with so much oil gave rise to other house chores like mopping Zoe’s oily footprints off the floor, boiling her laundry in hot water to remove the oil, and sweeping away all her skin flakes that were constantly falling on her clothes and onto the floor.
Network of support
Her thick and dry skin also meant she battled a perpetual itch, which especially plagued her at night and affected her sleep.
Samuel would sit by her bedside every night for up to an hour, using a gentle scratcher to soothe her back.
“The everyday caregiving has become quite a routine till today,” he said. “But I don’t feel it’s tedious or that I am missing out on life.
Samuel assisting three-year-old Zoe with her bath.
“God gives me a constant supply of grace and anointing to enjoy seeing my children and caring for them, so I feel I can continue to do this for as long as possible.”
In the past, he was assisted by his ex-wife, a domestic helper and his parents. His then-wife left the family a year after Zoe was born.
Now, Samuel’s mother lives with him and assists with the bath routines, laundry and cooking of meals. His father accompanies Zoe to school and lingers there to tend to her needs.
The arrangement allows him to take Zoe and his two older children, Benjamin and Charis, outdoors to play after all of them return home after school.
For the most part, Samuel finds the daily routines “easy” to get through. However, he admits that there are longer days when it can get frustrating.
Samuel scratching Zoe’s back to help her ease into her afternoon nap.
These are usually when Zoe finds it hard to take her afternoon naps or fall asleep at night, and he has to be by her side gently coaxing her to do so.
“Her skin grows at a rapid pace and so her body uses up a lot of energy generating new skin every day. If she doesn’t get enough rest or sleep or have sufficient protein in her diet, her body may draw on its reserves and she may suffer cognitively,” he said.
Given the possibility of these serious consequences arising, there have been moments when he has become impatient with his daughter.
“During these times, I try not to guilt-trip myself but remind myself to refocus on God and His promises. That gives me strength. I know I have to lean on the grace of God,” he said.
Spiritual disciplines
Samuel believes it is his Christian identity and the spiritual disciplines he grew up with that have shaped him.
“BMT gave me that kind of joy and purpose in doing the routine things that all the guys have to do there,” he said, sharing that back in his army Basic Military Training days during National Service, he made it a point to wake up an hour-and-a-half earlier than the stipulated time in order to spend with God.
His daily habit was eventually discovered by one of his commanders who talked him out of limiting his sleep, out of concern for Samuel’s safety during training.
Samuel reading Bible stories to Zoe at night.
His faith background is one of the reasons why he strives to nurture “God-consciousness” among his three children through their daily habits.
On school days, he leaves the house for work at 5:30am. Along the way to work, at about 6.55am, he would call home to pray with his children.
“By then they would be up and getting ready to leave for school. On speaker-phone, I would commit our day to God and bless the three of them,” said Samuel.
Every night after her bath, Samuel also reads Bible stories to Zoe before she sleeps.
Sometimes, he gets divine insights from the stories and shares them with his two older children the following day, creating space for discussions. The family also attend New Creation Church together.
Angels in the living room
It is clear that for Zoe, now 7, her Christian identity is central to her life.
Each time she meets someone new, one of her first questions would be: “Do you know Jesus?” She also freely shares about her faith with her classmates in school.
Her father and grandmother have modelled for her how to pray about anything she is concerned about in her life. She often does so on her own initiative whenever she encounters health issues.
She also had a ready “testimony” to share with this writer, who tagged along for one of her hospital appointments.
Zoe shared: “There was one time at night when the floor was cold and my knees were in pain. I sang the song ‘Jesus loves me’ and then I didn’t feel any more pain. Amen.
“God is good to me. He answers my prayers,” she added simply.
This writer probed further: “What about your skin condition – did you ask God about it?”
“It’s uncomfortable and I wish I didn’t have it,” she answered frankly. “But of course, I don’t question Him about it, it’s rude.”
With her grandmother who lives with the family and helps to care for Zoe.
Three-year-old Zoe with her older brother, Benjamin, and her eldest sibling, Charis.
Her grandmother, June Ng, 70, shared how her own faith has been impacted by little Zoe’s.
“Once this year when we were leaving for school, Zoe told me she saw angels at our living room window. At night, she drew what she saw – Jesus in the middle and angels in a circle surrounding Him,” June described.
Curious about what exactly her granddaughter saw, she began searching online for images of angels. There was one picture that Zoe pointed out which bore a resemblance to what she saw.
Another night, Zoe’s brother, Benjamin, 11, was leading them in singing worship songs when Zoe suddenly exclaimed excitedly that there were angels in the room. Benjamin and June could not see any.
As Benjamin tried to stretch out his arms to touch them, Zoe said: “They are going up! They are going up!”
Said June in Mandarin: “I believe she can see the angels as she has a childlike faith.”
Pressing on
Looking back on God’s faithfulness in their lives, the family remains hopeful for the new year.
The doctors’ review at Zoe’s latest hospital check-up has been largely positive.
Samuel taking his three children for some outdoor fun.
Currently, she takes oral medication through a syringe daily to manage the rate of her skin growth. She also takes multivitamins and protein supplements.
As the oral medication needs to be mixed and has a short shelf life, Samuel has been making trips to KKH every two weeks to pick up her medicine.
During the latest review, the head of dermatology service at KKH proposed for Zoe to try taking the capsule form of the medication instead, as that would be more convenient for them.
He also updated Samuel on the possibility of starting Zoe on a new drug that would likely trigger less of an immune response from her, hence having better skin outcomes.
Samuel raised to the psychologist the issue of Zoe being less keen to engage in reading, and also discussed her penmanship issues and writing speed with the doctors.
Tucking into her bowl of noodles at lunchtime before the doctors’ checkup at KKH.
Zoe is able to write and draw by grasping the pencil.
With her hand-drawn cartoon strip.
The medical team is in the process of creating a prosthetic hand for Zoe in the hope that it will help in her daily functions.
“I am not sure if it will help but we will cross that bridge when we get there,” said Samuel.
Zoe is coping well academically for now, having just finished Primary 1 at Nan Chiau Primary School. Her bubbly and exuberant personality is heartening to all.
Turn to God
On his part, Samuel just focuses on raising children who know that they can turn to God for any problems they encounter in life.
“They won’t need to turn to Papa or feel that there is no solution. May it be the most natural thing for them to discover that they can always rely on God,” he said.
“We have this assurance that He will sustain us through afflictions and provide for all our needs so that other people around us can see Him and His faithfulness through our lives.”
