She is one of only 20 known cases in the world: This Singaporean baby born with a rare skin condition has beaten the odds to survive and thrive
Trigger warning: There are explicit medical photos in this article which some may find disturbing.
by Janice Tai // December 27, 2023, 12:32 pm
Seven-year-old Zoe knows she is deeply loved by God and her family. Photo by Samuel Ng and Janice Tai.
The first words the nurse greeted Samuel Ng with in 2016 upon the arrival of his third baby daughter struck him as odd.
“Don’t be shocked, okay?”
It was both a statement of concern and a warning.
Under the hot intense glare of the light that shone on her in the NICU (Neonatal Intensive Care Unit) incubator, he saw his baby girl.
She was encased in layers of thick and hardened skin that was so tight that they pulled her eyelids and lips back, so much so that her eyes and mouth appeared blood red.
For a moment, Samuel could not recognise the baby before him as his own.
“Is this mine?’ the honest thought flickered through his mind.
The anointing of a spirit of love
Then almost as instantaneously, an overwhelming love for her flooded his being.
“Somehow inside my heart, there was no fear, anxiety, sadness, depression or disappointment, though I have no answers.”
“I wondered whether she was feeling any pain because her skin looked so dry and shiny under the light. I thought about how I could help make her feel more comfortable,” said Samuel, now 44.
“On hindsight, that was the first example of God’s faithfulness of how He has supplied our needs. He 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,” he added.
His daughter, Zoe, was diagnosed with Harlequin Ichthyosis, a rare genetic disorder that causes thick and scaly skin prone to cracking and constant infections.
In the past, babies born with this condition usually do 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.
The condition is so rare that Zoe is one of only 20 people in the world known to have it, of which less than a quarter live in Singapore.
Jesus loves you, Zoe
As he looked at Zoe, Samuel began singing a song to her. It was a song that she would have been familiar with as it was sung to her in the womb even before she was born.
The tissue turned necrotic and, within the first week of her life in the hospital, her hands fell off on their own.
“Jesus loves me this I know, for the Bible tells me so. Little ones to him belong; they are weak, but he is strong,” her father sang these lines to her above her incubator.
The next few minutes and hours were filled with a flurry of activity and decisions that needed to be made – from shifting Zoe to KK Women and Children’s Hospital to being counselled about financial matters and 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.
“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,” Samuel told Salt&Light. “I had to trust the healthcare professionals.
“But there was this security that we were in God’s hands and that whatever happened, even sickness and death, it’s never hopeless.”
The first challenge for Zoe was beating the odds to survive.
Ichthyosis is derived from a Greek word, ichthys, which means fish. It refers to a fish scale-like appearance of skin.
Zoe was born with a thick casing of rapidly-growing skin that 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 in the hospital, her hands fell off on their own.
In her first few weeks in ICU, a doctor also prepared Samuel for the eventuality that Zoe might not survive if her high fever did not come down.
The doctors needed to find the source of her fever and decide whether she could be administered intravenous drugs as her skin was so thick that the needles could not find her veins.
Miraculously, Zoe not only pulled through but also made it through her two-month stay in hospital.
A constant supply of grace and provision
Through it all, Samuel saw the hand of God in providing for them.
“God gives me a constant supply of grace and anointing to enjoy seeing my children and caring for them.”
“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,” he said.
The regimen of round-the-clock care required was intense.
Every 15 minutes, the nurses needed to put eyedrops for her. Every half an hour to one hour, her body needed to be moisturised with paraffin to prevent her skin from drying out and to facilitate the shedding of outer layers of skin.
“It helped that the school I taught in was supportive and give me flexible time away. It also had insurance provision for us so finances was partly taken care of,” said Samuel, who is a music teacher in a secondary school.
Transiting Zoe back home proved to be another challenge for the family.
Coming from a controlled hospital environment, they did not know if Zoe would adapt well to the humidity, temperature and dust levels of the home.
The family did their best to make her as comfortable as possible.
Eye drops every half an hour, paraffin every two hours and eye gel before she slept.
Her daily long baths could stretch up to three or four hours – they required firstly, exfoliating all the dead skin limb by limb using coconut oil, and then, moisturising her thoroughly with a mixture of paraffin and coconut oil.
Having to slather her with so much oil also resulted in other forms of housework that needed to be done: 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.
Her thick and dry skin also means she battles a perpetual itch, which especially plagues her at night as she would have difficulty falling asleep.
Samuel tried to help her sleep by sitting by her bedside every night for up to an hour, using a gentle scratcher to soothe her back and ease her itch.
“The everyday caregiving has become quite a routine till today,” he admitted.
“But I don’t feel it’s tedious or that I am missing out on life.
“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,” said Samuel, who has two other older children, Benjamin and Charis.
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.
Samuel believes it is his Christian identity and the spiritual disciplines he grew up with that have shaped him to be the single father who is deeply involved in caregiving.
Rooted in spiritual disciplines
Back in his army Basic Military Training (BMT) days, he made it a point to wake up an hour-and-a-half earlier than the stipulated time in order to do his Quiet Time with God.
“I try not to guilt-trip myself but remind myself to refocus on God and His promises. That gives me strength.”
His daily habit of limited sleep was eventually discovered by one of his commanders who talked him out of doing so from concern for Samuel’s safety during training.
“BMT gave me that kind of joy and purpose in doing the routine things that all the guys have to do there. It was also in my youth fellowship days and growing up in a mission school that fostered that Christian identity and culture that is very different from the world’s culture,” said Samuel.
It also helps that Samuel has a strong network of support provided by his parents – his mother lives with him and assists him with the bath routines, laundry and cooking of meals, while his father accompanies Zoe to school and lingers there to tend to her needs.
The arrangement allows Samuel to take the children outdoors to play after all of them return home after school.
Though for the most part he finds the daily routines “easy” to get through, there are longer days when it can get frustrating.
These are usually the times 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,” said Samuel.
Given these possible serious consequences, there have been moments when his composure cracks and he becomes a bit 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 even though my flesh may be weak. I know I have to lean on the grace of God,” he said.
Prayers over the speakerphone
That is why the father tries to nurture in his three children a “God-consciousness” through daily habits from young.
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 for his children.
“By then they would be up and getting ready to leave for school. On speakerphone, 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, when they have discussions about their respective Quiet Time.
Seeing the divine in everyday life
For seven-year-old Zoe, it is clear that her Christian identity is central to her life.
“I believe she can see the angels as she has a childlike faith.”
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.
“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,” she said solemnly.
Zoe attends New Creation Church with her family every Sunday.
“God is good to me. He answers my prayers,” said Zoe.
“What about your skin condition – did you ask God about it?” this writer probed further.
“It’s uncomfortable and I wish I didn’t have it. But of course, I don’t question Him about it, it’s rude,” she answered frankly.
At home, her grandmother shared with Salt&Light 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,” said Zoe’s grandma, June Ng, 70.
Curious about what exactly her granddaughter saw, she began searching online for various images of angels. There was one picture that Zoe pointed out to her which bore a resemblance to what she saw the other day, she told her grandmother.
Another night, Zoe and her grandmother were singing along to the worship song that her brother Benjamin, 11, was leading them in when suddenly the little girl exclaimed excitedly that there were angels in the room. Her brother and grandmother could not see any and Benjamin tried to stretch out his arms to touch them.
As he did so, his sister said: “They are going up, they are going up!”
“I believe she can see the angels as she has a childlike faith,” said her grandmother in Mandarin.
Looking forward to the new year with hope
Looking back at God’s faithfulness in their lives, the family remains hopeful for the new year.
“May it be the most natural thing for them to discover that they can always rely on God.”
The doctors’ review at Zoe’s latest hospital check-up has largely been positive. Her bubbly and exuberant personality has been heartening for all.
Currently, Zoe 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, her father has been making frequent trips to KKH to pick up her medicine every two weeks.
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.
For now, Zoe is coping well academically, having just finished her Primary 1 studies at Nan Chiau Primary School.
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.
Right now, Samuel just focusses 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 for the future 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.”
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