God’s Unexpected Good Plan for Me: A Baby with Down Syndrome

All photos courtesy of Dawn Koh

All photos courtesy of
Dawn Koh

What do you do when God calls you to something—that was never in your plans? Will you trust Him? Will you embrace His call?

It was during the first routine check-up that my husband, Jason, and I learned that all was not well with my second pregnancy. A subsequent, more detailed ultrasound scan confirmed what was suspected by the doctor: our baby had a high likelihood of having a chromosomal abnormality, specifically, Trisomy-13 or Patau Syndrome. Most children born with Trisomy-13 do not survive past their first year, and may die within the first month of birth.

The news shocked us. And before we could fully process what was happening, the gynecologist said matter-of-factly,

We were stunned by that statement. We had not expected to be presented with abortion so bluntly. We soon learned that this was common with medical practitioners. If a fetus is possibly abnormal, termination is promptly proposed. Alternatives are rarely offered, let alone informed advice on raising a child with special needs.

I’ve always had a strong and vocal stance against abortion. But suddenly, the issue was no longer theoretical or distant. Faced with the decision myself,

As devastated as we were, my husband and I made it clear to the doctors: we will be keeping the baby.

That didn’t mean that the journey after was easy. I grieved over the loss of the child that I had in mind. My husband was deeply affected too, although I didn’t realise how sad he was until the day he broke down in public when sharing the news with our cell group leader.

There were moments when I wondered about whether we should consider abortion. It sounded so easy to get out of this whole situation. But I knew the choice was wrong and one that I wouldn’t be able to live with.

I reminded myself: “All things work for the good of those who love Him”, and that those who hope in the Lord shall not be put to shame.

Thankfully, we had a supportive family and church community. They didn’t offer platitudes, overwhelm us with Bible verses, or force any opposing views on us. Instead, they trusted that we were mature enough Christians to know the right thing to do, and were simply there to listen and help us process our thoughts. I’m grateful that none of our loved ones pressured us to abort our child—that would have been very distressing.

For the rest of the pregnancy, Jason and I continued to pray for a healthy child. I didn’t want a medical condition to define my child yet, so I didn’t do any research and surrendered the situation to the Lord. During subsequent scans, our baby looked normal and very much like our firstborn. So we kept hoping.

However, my belly was huge. I looked like I was in my third trimester even though I was only in my second. That was one sign to me that things weren’t quite normal.

At 33 weeks, my body couldn’t sustain the size of my belly anymore and I started to have contractions. I was anxious about how my baby will turn out, but on the day of labour, I felt the Lord tell me:

We tried to delay the contractions, but shortly after I gave birth to my son, Daniel.

We soon learned that he had blocked intestines that prevented him from properly absorbing the amniotic fluid in-utero babies usually swallow. It was the excess fluids that caused my belly’s size to balloon.

The diagnosis of chromosomal abnormalities was soon confirmed. But Daniel did not have Trisomy-13. He had Trisomy-21, otherwise known as Down Syndrome.

Exhausted from labour, I had little energy to process my immediate feelings. Naturally, we were saddened to learn of our newborn’s condition. However, what was more painful at that point was that I was separated from Daniel immediately after birth due to his health complications, which meant he had to stay in the newborn intensive care unit for nearly a month.

All I wanted was to care for my baby just like any mother would, and it pained my heart to know that he had to undergo surgery at just 2 days old. Despite Daniel’s condition, all I could see then was a baby who needed to be loved and cared for.

Only after giving birth to Daniel did I start googling about Down Syndrome. At the time, I knew almost nothing about the condition except for images I’d seen or strangers I’d passed on the street. I had always perceived people with Down Syndrome as a helpless group, mentally slow, and unable to take care of themselves.

However, as I did my research, I discovered blogs and stories of people with Down Syndrome living very normal lives—and thriving. They are trailblazers like Karen Gaffney, who is the first person with Down Syndrome to swim across the English Channel, and robust children like Josee Hope.

Decades ago, people with Down Syndrome were typically kept in institutions which stunted their growth. These days, children with Down Syndrome have greater access to early intervention such as physio, speech, and occupational therapies to aid them in achieving their milestones.

My husband and I are determined that we will do the best that we can to help Daniel thrive and grow up to live an independent life. I know that God has a great plan for Daniel that is waiting to be fulfilled!

A key feature of Down Syndrome is weak muscle tone. This meant that as a baby, Daniel felt floppy like a ragdoll in my arms. We started him on monthly physiotherapies since he was two months old, diligently exercising and massaging him everyday so that he will hit his milestones such as flipping, crawling, and walking. Watching Daniel hit every milestone has been immensely rewarding because he had to work so hard for it!

Today, Daniel is a lively toddler who loves to chase his older brother around the house and we are proud of how far he has come. Daniel attends therapies 2-3 times a week and we are glad that developmentally, he is tracking well with his peers, apart from speech where he is the most delayed.

There were definitely times when I questioned God, “Why? Isn’t it Your will for us to have good health? I was claiming all these promises in the Bible and having faith. Why did Daniel not turn out a healthy baby?” Over time, I came to the realisation that we’re meant to do God’s work on this earth and that His plans often involve the unexpected. All we have to do is to obey the Lord.

One verse that encouraged me was Deuteronomy 7:9: “Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love him and keep his commandments, to a thousand generations.”

Without Daniel, I would not have understood God’s heart for people with Down Syndrome. That’s how God works. The fact that Jesus had to be born as a Son of Man, and go through life and eventually die a horrible death, shows me that God comes down to a level that we can connect with. As Hebrews 2:18 (NLT) says, “Since he himself has gone through suffering and testing, he is able to help us when we are being tested”.

Similarly, because of Daniel, I have more compassion for people with Down Syndrome and am mindful of the challenges they face.

This is why I started a blog about Daniel, to speak up about the misconceptions of Down Syndrome that has contributed to many misinformed terminations, and to educate society on the progress and achievements made by people with Down Syndrome.

I am also part of a local community of parents whose children have Down Syndrome, and work with the Down Syndrome Diagnosis Network, an international organisation that seeks to educate the medical community on best-practices in delivering a Down Syndrome diagnosis.

Having a child whom I had not planned for is not the end of the world. At one point of my pregnancy, I had thought, “I don’t know if I can love a child with disabilities.” It’s terrible, isn’t it, to have a child and not love him? But this was never a problem: I loved Daniel from the moment he was born. I guess this is a natural mother’s instinct, and I realise I never had to worry whether I will love my child.

Yes, Daniel needs more assistance in his development, but I don’t see it as a burden. Every child has different needs: sending Daniel for therapies is not more effort than sending his older brother to enrichment classes.

Daniel has brought so much joy to our family. A strong-willed, sometimes stubborn boy, Daniel has an infectious smile and also strong empathy for people around him—he will be the first to get tissue paper for his crying brother, and there was once, a parent from Daniel’s preschool wrote to tell me that Daniel saw her son crying in school and sat down next to him to comfort him!

I never regretted having Daniel. I’m blessed to be his mother and I can’t wait to see what he grows up to be. I could never have thought it possible before, but it’s true—Daniel really is God’s good plan for me.

Dawn Koh is a wife and mother of two little boys. She works as an investment analyst and worships at Cornerstone Community Church. She writes about life with her son on her microblog “Letters to Daniel”, hoping to change perceptions of Down Syndrome in the Singapore community.

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