“My heart needs a surgeon”: God spoke to us through a song when our 2-year-old son had a life-threatening heart condition

“My heart has been in Your sights
Long before my first breath
Running into Your arms
Is running to life from death”
 ~ Run to the Father by Cody Carnes

We never expected God to use this song in ways unimaginable when our lives took a turn late last year. 

Evan was born in October 2022, and apart from a few minor issues that were highlighted to us, he was considered healthy and well. He had jaundice, clicky hips (which eventually went away), and he was found to have a low-lying spinal cord.

Evan Goh was born in October 2022.

At birth he was mostly a normal, healthy child.

His health issues became more prominent at two months of age, when he repeatedly vomited milk. He would randomly vomit in his cot while soothing himself to sleep, and there were times we would find a pool of vomit in his bed in the middle of the night, just from a slight cough. 

We sought help from a paediatrician for reflux, and a feeding therapist for feeding schedules. While things improved, there were still many occasions when he would vomit half a bottle of milk three hours post-feeding. 

We spent many nights cleaning the furniture, doing the laundry, and showering him because of this issue. 

At some point, we developed a phobia of feeding him. We spent a few months just staying home because we were worried that he might vomit at a friend’s house or in public. We were told that reflux was something that a baby would eventually outgrow so we just had to pray and wait it out. 

Developmental hurdles

At four months of age, Evan was found to have inguinal hernia, a profusion in the groin that may potentially cut off blood supply to the intestines.

He underwent a surgery and recovered well. He was hitting most of his milestones except his gross and oral motor skills. 

Evan after his inguinal hernia surgery at the age of four months.

Due to his reflux issue, we could not really do tummy time because he would cry and vomit the previous feed. As a result of this, Evan’s neck was still rather weak at six months, and he could not walk independently at 18 months. 

At six months of age, Evan’s neck was still strengthening.

We were referred to a neurologist for possible neurological conditions resulting in this delay in walking. Fortunately, it was assessed that we could still adopt a wait-and-monitor approach as he did not seem to exhibit any cognitive challenges. 

Aside from all these health challenges, Evan was hospitalised five other times for many different issues, ranging from dehydration to pneumonia. 

Evan was in and out of hospital five times from a young age.

Evan during one of his early hospitalisations.

Despite all our challenges, my husband and I tried our best to live life to the fullest. We brought Evan out for various experiences while managing his feeding difficulties.

Despite their baby’s many health challenges, Vanessa and Patrick tried to keep their family life as normal as possible.

Things got worse quickly when he started school at two years old. We were in and out of hospital for minor flu viruses. It struck us as strange that, unlike other kids, Evan had little immunity to fight normal flu viruses, often needing steroid medication through IV plug to calm his respiratory system. 

Both of us were still working full time then, and we had burnt through our limited childcare leave on Evan’s hospitalisations alone. I spent many nights in sadness thinking about what else I could have done to better support Evan’s growth. 

I had done all that I could – breastfeeding for better immunity, bringing him to different allied healthcare professionals and following up diligently on all their strategies, feeding him multi-coloured vegetables and fruits for different vitamins.

The helplessness I felt on some lonely nights was so overwhelming to bear. 

Face to face with the Man of Sorrows

In December 2024, Evan caught another flu virus. We tried to give him the usual medication, but he was not getting any better. Upon seeing a doctor, we were told to head to the A&E immediately because Evan was wheezing again. 

This was our seventh trip to the A&E. I was expecting the regular treatment to be given to him at A&E, but this time things were different.

A doctor had picked up a cardiac murmur and told us that they needed to run further checks on Evan’s heart. His heart looked out of proportion based on the X-ray – that was a cause of concern to the medical team. They ran a preliminary scan on Evan and confirmed that there were no large holes in his heart. A detailed scan would be done the next day. 

Evan was admitted that evening – my husband Patrick stayed with him that night.

I went home to rest after a long day, and the first thing I did was burst into tears. 

While weeping, I could only remember one Bible verse. It was the shortest verse in the Bible: “Jesus wept.” (John 11:35). In my tears of sorrow, I met the Man of Sorrows. 

Looking back, I think it was a complex mixture of emotions that I was facing: Fear, anxiety, a thousand What ifs, grief. 

I grieved the possibility of yet another potential diagnosis. This was his sixth hospitalisation, and we were already seeing a physiotherapist, a dietitian, a neurologist, and consulting a feeding clinic. Our baby already had a surgery done at just four months old. 

One more thing? Really, God? 

I was sobbing so badly, I couldn’t catch my breath to even pray. At the end of it, I merely uttered: “Jesus, You see me. Meet me where I am.” 

The heart of the problem 

The next afternoon, Evan went for an ultrasound scan. The staff went back and forth during the scan, muttering to each other phrases that I had no understanding of. 

If my life was a tape that could be rewound to the moment that I had prayed the hardest, I think it might have been that moment during the ultrasound. 

A cardiologist shared with me that one of Evan’s heart vessels did not close after birth the way it was supposed to – a condition known as Patent Ductus Arteriosus. This vessel had been oversupplying Evan’s lungs with blood for the past two years, causing him to be more prone to lung infections. 

Evan would need to undergo a surgery to close this vessel. 

This condition is usually detected within the first few months of birth but in Evan’s case, it did not get picked up somehow. Because it was undetected for so long, his heart had been overworking and had become enlarged, resulting in three out of four valves not closing well, causing mild backflow. 

This condition also explained his weak immunity, poor feeding and breathing difficulties, alongside poor weight gain because his body had been overworking and taking up all the calories. 

God spoke that very day. While Evan was at the corridor of his ward playing with a Christmas tree, a mural of paintings caught my eye, specifically three paintings. They were lined up in one column: God saves, rainbow (symbolising God’s promises in the Bible); and an ECG wave. 

God ministered to Vanessa through several artworks that uncannily spoke of what Evan was going through.

That night, Patrick and I hugged each other and cried outside his hospital room. The news came as a shock, there were still so many questions that remained unanswered. 

Would Evan be able to continue to lead a normal life post-surgery? Does this condition affect anything else other than his heart? What would his life span look like given this heart condition? 

We prayed together and committed Evan’s heart and life unto the Lord’s hands – it was beyond us. 

The Lord heard our prayer last night loud and clear.

The next morning, I went back to the hospital and noticed an artwork in the exhibition right outside the gantry: A picture of a heart nestled in a pair of Hands.

This artwork, Heartbeats through Time by Valerie Ip Li Xuan of Crescent Girls’ School, was visual confirmation that Evan’s heart was in God’s hands.

Wrestling with God

The next three weeks were a blur, an emotional roller coaster ride. One moment I was waking up and giving thanks that the root issue to Evan’s problems had been found, and that God’s signposts have been evident. 

The next day I would wake up in bitterness, and the anguish I felt on those days hit me in so many ways. 

I struggled to understand why of all children, it had to be mine that had to suffer. I struggled with the fact that God in all His wisdom and sovereignty would allow such a late discovery when damage had already been done to his heart. How do we even see Romans 8:28 in such a situation? I was wrestling in the paradox of pain and promises of God knowing Evan must go through another operation and hospitalisation. 

As we battled with our emotions, we also knew that we had to move fast. We started seeking a second opinion to confirm his diagnosis. Thank God, we had insured Evan early on, so we had the option of going to a private surgeon. His surgery was set three weeks after confirming his diagnosis. 

We had another dilemma: Which approach should we choose?

We were given two options: Either via a catheter entering via the groin region to insert a device (done by cardiology team) or a direct opening at the side of his chest to close the vessel (thoracotomy done by a cardiothoracic surgeon). 

The catheter approach was less invasive, but the device would be within Evan for life – a fact we were not comfortable with. 

On the other hand, the surgery approach would be invasive, and we were not sure if that was the best option for Evan. 

We decided to fast and pray to hear from the Lord. At the back of my mind I had a moment of doubt if I would be able to hear clearly from Him. 

God spoke a few days later through a worship song we were familiar with. While we were playing worship music on YouTube, Run to the Father by Cody Carnes played. 

“… You saw my condition
Had a plan from the start …
My heart needs a surgeon
My soul needs a friend
So I’ll run to the Father
Again and again
… My heart has been in Your sights
Long before my first breath
Running into Your arms
Is running to life from death” 

We felt God was telling us to go by surgical approach specifically through the word “surgeon” in that song. Hence, we went with that. Although this approach was invasive, we had a strange peace and assurance that this was the right move and that God was watching over Evan’s heart – the heart that has been in God’s sight long before Evan’s first breath.

A friend practising in the field of medicine agreed that the long-term benefits of surgery would probably outweigh the trans-catheter approach. 

The days of waiting for the surgery seemed so long. Each time my spiral of negative doubts and thoughts began, I would fight to recalibrate my heart and mind to God’s truth. The fear and grief were real, but we knew the hope and promises of God were just as real. 

I prayed so hard for God’s miraculous healing to happen – God willing – and that my little boy would not have to go through all the pain. Nevertheless, we tried our best to give Evan some preparation before the surgery. We also equipped him with three words when he was scared: “Help me, Jesus!” 

Evan undergoing pre-admission tests before his heart surgery.

Vanessa and Patrick taught Evan to cry out if he was afraid during surgery: “Help me, Jesus!”

A detailed scan was done right before the operation to determine the most updated situation, and it was found that the situation was worse than expected. Evan’s pulmonary pressure was found to be three to four times that of a normal child’s, and the catheter option was not so feasible after all. 

We looked at each other when this was told to us: God knew and directed us to choose surgery for Evan.

As the surgery proceeded, our cell brothers and sisters each took a time slot to keep Evan in incessant prayers throughout the day. 

We had peace in our hearts because God had already demonstrated his assurance step by step. We just needed to walk through this challenge, and to support Evan through his recovery. 

Evan’s surgery went smoothly. When we saw our son after his operation, our hearts were shattered by the sight: He had seven tubes hanging out of his tiny body. He was intubated through his mouth, a feeding tube through his nose, a chest drainage tube hanging out of his chest, a urinary catheter, and he needed IV lines at his neck, wrist and legs. 

I remember crying badly that night in full view of the ICU nurses. Evan had to stay in the ICU longer than expected because his high pulmonary pressure required close supervision.

Evan after his successful heart surgery.

Giving thanks

Despite all that we have gone through, we give thanks for a long list of things that we will never take for granted: 

That God had watched over Evan and sustained him despite the large vessel that remained open in his heart. Our surgeon knew of cases of Evan’s profile – late discovery of the condition – that did not make it to the operating theatre. 

That God spoke so clearly through paintings and worship music to direct and comfort us every step of the way.

That our bosses and colleagues were extremely understanding towards our need to manage Evan during the difficult times, and his teachers and principal were so accommodating towards his additional needs.

That our cell brothers and sisters saw us through this journey and supported us by covering us in incessant prayers.

And we had a whole village of support from all the grandparents, from caring for Evan and cooking us meals, to providing transport to and back from hospital. We withdrew him from school to allow him to fully recuperate and build up immunity again. Grandparents took turns to care for him during this period of time. 

Evan one month after his surgery, here with his maternal grandparents and aunt.

Evan celebrating his recent third birthday with his paternal grandparents and aunt.

The experience of raising Evan in this past three years has undeniably brought us fresh perspective of the magnitude of God’s love for us – so much that He would see his only Son suffer on the cross to pardon us from eternal death. 

I never really understood what it meant to lament – until Evan’s challenges came along. I lamented because it was painful to go through the circumstances of seeing my child suffer, yet I lamented exactly because I knew God was still in control. 

From a child that was diagnosed with “failure to thrive” before he turned one, due to his weight gain problems, Evan is now a child who has put on 3kg since his surgery 10 months ago, and recovered from regular flu by himself three times without the need to rush into A&E. Only God could turn our situation around.

We have hesitated to share Evan’s story publicly before this, but we hope with all our hearts that by our testimony, parents who are facing challenges will be encouraged that dark clouds will only lead us to deeper mercy. The weight of the valley only reveals the depth of His grace. 

Six months after the surgery, we did a photoshoot with Evan to memorialise what God has done in our lives this season. Today, there is no longer any leakage in Evan’s heart valves, and his heart is almost the normal size now.

Little warrior Evan Goh, six months post-surgery and thriving.

The Gohs commemorated their journey with this photo shoot, giving glory to God.

All praise and glory to God! 

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The post “My heart needs a surgeon”: God spoke to us through a song when our 2-year-old son had a life-threatening heart condition appeared first on Salt&Light.