“Before our baby was born, we were asked if we wanted a casket for her body”
By
Kenny and Faith Cheng
, 16 December 2022
Baby Aleena was not expected to be born alive. Then her parents were told she had two hours to live. Now, the miracle baby is three years old. She is pictured at four months, after her first heart surgery. All photos courtesy of the Cheng family.
As Faith was wheeled into the delivery suite to give birth to our baby Aleena, we were preparing for her death.
We were asked if we wanted to get a casket ready for our baby’s funeral or to leave her body in the hospital.
We felt overwhelmed and without hope as the medical staff braced us to see our stillborn baby.
Stabbed in the heart
Faith was only three months pregnant when we got the first inkling that something was not right.
During a routine ultrasound check, our gynaecologist told us he didn’t like what he was seeing. Our baby’s nuchal (neck) thickness was too thick. He sent us for a further test.
The results showed a possibility of abnormalities of the brain and a cleft lip.
We were completely caught off guard and shaken. But we still prayed, hoping our baby would turn out fine like most other babies we knew.
We clung to the hope that God might perform a miracle and heal our baby in the womb.
Faith went for an amniocentesis test and scans on Aleena’s heart and brain to get a more accurate picture of our baby’s issues.
The neonatal specialist broke the hard news, telling us that our baby had a chromosome disorder.
The scans also showed that part of her palate and the lower part of the vermis from her brain were missing. There was also a 2.7mm hole in her heart.
As we heard each piece of news, it felt like someone was stabbing our hearts with a knife again and again. We were devastated.
Doctors said that our baby would die in the womb … if not shortly after birth.
Clinging to hope
At home, the tears and intense emotions came. Every night, we were flooded with pain.
It was a far cry from the joy we felt in January when the home pregnancy kit showed that Faith was expecting.
A month earlier, God had told us that we would be having a second child, and that it would be a girl. It would be this that helped us to cling onto the hope to keep Aleena no matter what the doctors said.
Among the people journeying with the family are Faith’s (left) spiritual mentors who have been praying and providing emotional support since the day she received the news about Aleena’s medical conditions in the womb.
Ken (left) with Pastor Kirk Tan who has been a constant source of comfort, help and support in the challenging three years. He updates the church community on Aleena’s progress and rallies prayers for her.
God also had given Faith the following Bible verse: “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you a hope and a future.” (Jeremiah 29:11)
She questioned and asked God, “How can a baby so sick be God’s way to prosper our family? Where is our hope and future when doctors say it is only death that awaits our baby?”
Each day and night, we clung to the hope that God might perform a miracle and heal our baby in the womb.
“I don’t make mistakes”
We felt the pressure to end the pregnancy. Many felt it was too cruel to bring a baby with so many medical conditions into this world. We almost gave in when we booked a termination date.
Faith cried, asking God to speak and show up. She didn’t want to just get a model answer from the Bible. She wanted to hear from God directly and specifically.
“Doctors told us we shouldn’t keep her. But I don’t want to have blood on my hands.”
One day before the procedure, God spoke to Faith through a brochure on termination. It shared the testimony of a doctor whom God convicted to turn from pro-abortion to pro-life.
God also spoke to Ken through their cell group leader, Francis. They bumped into each other at 2am – the night before termination date. This meeting could have only been arranged by God.
We told God: “Daddy God, this baby is given by You. We didn’t ask for her but You gave her to us. Now she is very sick and doctors told us we shouldn’t keep her. But I don’t want to have blood on my hands.
“And keeping her is extremely hard. We are so scared of what the future holds. You gave Lord, so You take control and take over.”
That’s when Faith heard God say: “I don’t make mistakes. Just trust me.”
That very night, we made up our minds. We would keep the baby no matter what.
We would let God decide how long she lives. He would take over.
Baby is crying, she is alive
Aleena’s cries were our first memory of her birth.
When Faith heard Aleena, she wept uncontrollably. In her heart, she told God: “Thank You, Daddy God, Aleena is crying … she is still alive.”
Aleena’s first hour on earth. Doctors told her father that she would only survive for two hours maximum.
Faith wasn’t able to see Aleena straight away. Aleena was immediately whisked to a corner by a team of about seven neonatal specialist doctors who checked her breathing and blood pressure.
“Baby’s oxygen level is only 20%. She will be alive for a maximum of two hours.”
A short while later, Ken carried Aleena to Faith.
Doctors had whispered to Ken: “Baby’s oxygen level is only 20%. She will be alive for a maximum of two hours.”
Ken didn’t say a single word about this to me, but started singing “Jesus loves me this I know, for the Bible tells me so …”
As Aleena continued to cry, we teared and sang the song while looking at her.
Hope of more memories
After about 10 minutes, doctors carried Aleena back to the corner. They re-checked her oxygen and blood pressure.
Then they told us: “We will be moving Aleena to the special care nursery. Her oxygen seems to be picking up.”
As Aleena continued to cry, we teared and sang the song while looking at her.
The doctors admitted: “We’re surprised she doesn’t need to go into the neonatal intensive care unit. We’ll keep a close eye on her, especially over the next 24 hours. She may deteriorate suddenly.”
We were ready to say goodbye at Aleena’s birth. Then doctors said that we may have two hours with her before she died. Now miraculously, she had survived.
At four days old in the Special Care Nursery with her mummy. Aleena was breathing well on her own with no need for oxygen or a ventilator until she was 12 days old.
We started to have hope again. Was there a chance for Aleena to live longer? For us to create more memories with her before God calls her home?
Aleena (pictured with her father) had to remain in the neonatal intensive care unit till end of February 2020 as she needed to be slowly weaned off the apparatus that had been supporting her breathing for a long time.
We braced ourselves for the unknown. Aleena could leave us at any time.
The doctors told us not to be too hopeful as her heart and brain abnormalities were pretty severe. Her heart could stop at any time.
The fight goes on
We thought God’s meaning of “giving us a hope and a future” meant a miracle healing for our baby from all her complex medical conditions.
But after overcoming death at birth, Aleena continues to fight and struggle.
Aleena is now three. She still needs constant care and 24/7 attention like a baby as she may choke on her vomit or secretions and stop breathing suddenly.
Aleena has spent most of her time in hospital which has become like a home to her.
She’s had operations on her heart (twice), stomach, cleft lip and palate, an emergency one on her spine … and there’s still more to come.
Currently, Aleena is in hospital because of a recurrent urinary tract infection. In January, she will be going for surgery to remove a urachus (embryonic remnant of a channel between the bladder and belly button).
Prospering the soul
Yet, through our season of pain, God has helped us to understand Jeremiah 29:11 through His perspective.
God’s meaning of prospering doesn’t equate to the world’s understanding of material blessings. It may not even be physical healing.
Without God, we might have sunk into severe depression in the wave upon wave of devastating news and medical scares.
Beyond all these, it is holding onto God’s faithful love – through the darkest valleys and most intense hopelessness – that will truly prosper our souls.
Without God, we might have sunk into severe depression in the wave upon wave of devastating news and medical scares.
Yet, each time extreme hopelessness hits us, God always shows up to comfort, reassure, encourage, provide for and guide us.
Aleena’s first Chinese New Year at home with older sister Alicia, now 6, and their parents in 2022. Her previous two were spent in hospital.
He is the reason for our hope and He is our future. Because of Jesus, we can face the future, no matter how painful or difficult it may be.
Check back soon for Part 2 of this story in which the family shares about the miracles and hope in the face of Aleena’s myriad surgeries, hospital admissions and new medical prognoses.
