When I look back on these past two years, I think of God’s graciousness to our family through our emotional mountains and valleys that have come to define this journey. I’m Kaitlin Quon. My husband Kevin and I have two daughters, Laura (4) and Corinne “Corrie” (17 months).
In pregnancy, as mothers-to-be, we have little to no control over the physical development of our children. Aside from going to appointments regularly, abstaining from drugs and alcohol, and trying to eat well, there is little we can do to manage the health and development of our unborn babies. After a miscarriage in our first pregnancy 5 years ago, Kevin & I were reminded that the process of having a child is completely in God’s hands and for His glory. We were devastated. But because we know the kind and gracious Father that we have, we did not despair (1 Peter 1:6-7). We knew we could trust in His giving and taking away (Job 1:21), trust in Him without leaning on our own understanding (Prov. 3:5-6), and trust that our suffering is God’s graciousness to us as He sanctifies our hearts to better glorify Him (1 Peter 2:19-21). By God’s grace, after our miscarriage we had a healthy daughter, who is now 4 years old. In 2018, we became pregnant a third time and this journey began.
The morning after our 19-week anatomy scan, I was called to return to the hospital for more imaging. They discovered there were possible cysts in the baby’s chest. At this next appointment, we learned that our baby girl had multiple cysts on her lungs and her heart was displaced to the opposite side of her chest. The cysts appeared to be pushing up against her heart, occupying a third of her chest cavity, leaving no room for her heart to develop causing her heart to be displaced. Yet apart from these large cysts, her heart was beating and she was developing normally. The condition was believed to be a Congenital Cystic Adenomatoid Malformation, also known as a CCAM. Statistically, one baby is diagnosed every 10,000 to 15,000 births.
Babies don’t use their lungs to breathe in utero. The lungs are hard to see on ultrasounds because the lining is so thin. The lungs are like deflated balloons that are activated when they take their first breath. For us, this meant that we wouldn’t know if Corrie’s lungs would be functional until she was born. She was alive and growing inside of me, but she was also at risk for cardiac arrest if the cysts were too much for her to handle. More so, Corrie’s birth could quickly lead to her death if her lungs failed to perform. Upon weighing these considerations, this doctor said life after birth would be unlikely, and recommended that we terminate the pregnancy. I am guilty for letting the thought cross my mind, not knowing if she was suffering, but I did not want to make that final decision. I knew that God would let me carry her, heart beating and all, until He allowed a situation otherwise. She was His. He created her, and He loved her more than I ever could. Kevin and I were just getting Corrie on loan basis for as long as He decided to grant us this joy.
There were times when I couldn’t pray or sing because I was without words. I was heartbroken and overwhelmed. I could do nothing but lean on the Lord – Lean on His words of truth – Lean on the prayers of friends and family – Lean on the songs of praise from the church in corporate worship. This was all evidence that He is close to the brokenhearted (Psalm 34:18). For weeks I was still processing everything. My mom, sisters, and Kevin frantically researched in utero interventions, doctors, and facilities to send us to. My dad was willing to send us to a hospital in Philadelphia that specializes in CCAM. But inside, I was frozen. I couldn’t process everything. All I could do was take it moment by moment. I kept holding on to the fact that her heart was beating and it’s a little girl. I went from guilt to denial to feeling like we already lost her. I just prayed over and over knowing that this baby, like the one we miscarried, would one day meet and live with Jesus regardless of whether or not she would make it through life here on earth.
Because our ordeal was considered a high-risk pregnancy, we were seen by a doctor specializing in CCAM almost every week until our third trimester, then bimonthly, then biweekly for fetal ultrasounds as our delivery date grew closer. Our doctor was monitoring the growth of the cysts and their impact on our baby girl’s body. For some weeks the cysts measured no change. Even no change was a grace to us! You see, if the mass grew too big relative to her chest’s growth, her body would become unsustainable within me. Other weeks the cysts were growing slightly larger relative to her body than in previous weeks. God was already at work! The saints were already praying. I was attempting to hold it together at work and at home trying not to think about the worst. God gave me my “manna,” only enough for one day at a time (Exodus 16).
In terms of a mother’s baby bump, I was showing a lot by this time and it was hard to keep smiling and thanking others for congratulating me on the pregnancy when there was a possibility our baby girl wouldn’t even survive. Everything seemed like it was out of my control yet, I knew nothing “is impossible with God” (Luke 1:37)! By God’s grace, we started to steadily see Corrie’s cysts decrease in size relative to her growing body. It was an incredible visual of God’s love and care for this little one that He had created, and a grace to our family as well. By the end of my third trimester, the doctors had a hard time visualizing the cysts on the ultrasound because her bones were ossifying, making the soft tissue difficult to see. She was expected to make it at least until the end of the pregnancy!
We ended up choosing to deliver in a location over an hour away in order to be at a hospital where God led us to a recommended pediatric surgeon in the case we needed him on the day of delivery. God was sovereign over the entire process. From the time I started contractions, to arriving at the hospital in only 45 minutes on a Monday morning with NO traffic…every possible detail went better than we could hope for! As I labored, Kevin and I listened to beautiful worship music, a constant reminder of the love of Christ and His nearness in our suffering. This was especially helpful in battling thoughts of uncertainty as we approached her birth. That evening, Corinne was born full-term in a room with a secondary medical team made up of 12 additional professionals who were present just as a precaution. Breathing independently on her own upon birth, she came out crying with no immediate complications – HALLELUJAH! We were able to dodge the Neonatal Intensive Care Unit that we were anticipating but ultimately did not require. Above all, we were able to take her home just a few days later, albeit knowing that there would ultimately be surgery to remove the cysts within her first year of life. Yet this was truly a grace upon grace (John 1:16)! She was born without symptoms of the cysts. However, an x-ray and later a CT scan would reveal that the cysts were still present and occupying nearly 90% of her upper left lung. She was beautifully surviving on a lung and a half!
The much-anticipated surgery to remove the cysts was eventually scheduled for April 2020. As COVID-19 spread, we attempted to bring the date forward, but the surgery was inevitably cancelled due to the pandemic. Corrie was now 13 months old and doing amazing despite getting sick often during cold and flu season. The pandemic put us on a hard lockdown because of Corrie’s respiratory risk for pneumonia prior to surgery. The possibility of illness could mean a long hospital stay for us in a now-COVID world. Yet there was also a time constraint to get things done. After the age of two, the window of opportunity for an optimal lung recovery after her surgery would begin to diminish. After many months of tedious waiting, we finally got the go-ahead in late August and surgery to remove her upper left lung was performed in September. Once again, God blessed us with His grace! We were so thankful to get her in before another cold and flu season, which would have been risky to endure even though she appeared healthy on the outside. The gravity of giving over your seemingly healthy baby for a major lung surgery was scary and difficult to endure. Even still, God was ever so present in giving us peace. I had to remember that this was His child, and ours to care for.
In the hours Corrie was away from me during the surgery that morning, the Holy Spirit ministered to my heart. I read email after email, text after text from friends and family who were praying, many sending me verses of hope and of Christ’s love to me. I could not have been more thankful for the church body in lifting her up during that time. Afterwards, the pictures taken in surgery were surreal to look at. Seeing the cysts in color was an incredible reminder of how God sustained our little girl, not only during this time, but also through pregnancy, through her first year of life, and even through the beginning of a pandemic. Even when forming Corrie’s lung in utero, God made an easy pathway for the surgeon to separate the upper lung lobe, resulting in a quicker recovery time. Praise God!
It was heartbreaking to see Corrie struggle the first 24 hours after surgery. She was still unable to talk at her age, but clearly sad and in so much pain. Thankfully, after her chest x-ray showed a successful result, the chest tube was removed. She was discharged the next day and couldn’t be happier to be home to be greeted by her loud sister!
I look back and I know it was God who calmed and quieted my soul during this time (Psalm 131:2). It was He who cared for my family and I through the prayers of the saints when I had no words, and it was He who created and sustained Corrie throughout my pregnancy (Psalm 139:13). God knew her suffering when all she had was the energy to whimper in the hours after surgery (Hebrews 13:5), and it was He who planned every detail and who continues to be sovereign over all things (Proverbs 16:33). What an amazing God we have! From being told by a doctor that I should terminate my pregnancy, to thinking I was going to lose my baby preterm, to the real possibility that my child might not inflate her lungs at birth I’m in awe of God’s creation, His mercy, and His grace in what He has done for Corrie. She was born without symptoms of the cysts that weighed on her everyday life. When the doctor removed the cysts, they were the size of a tennis ball. Nothing is impossible with God. Thank you, O church, for reminding me of this truth throughout this journey and in helping to point my weary heart to Christ every single time.
As I reflect on God’s mercies, I can only imagine how dramatically different things could have been than this ideal outcome for which we desperately prayed for and were blessed to receive. I think of the times when my heart fell into despair over circumstances, dragged down by the knowledge of how quickly that which I love could be stripped away without a say or the capacity to change it. And yet in those moments, God helped to calm my heart by reminding me that I was not alone. He was with me, and I was further fortified by the passionate encouragements of praying warriors who reminded me of God’s sovereignty during the hard times.
I am so undeserving of this grace that He allowed by your intervening prayers, just as I am so undeserving of the gift of His salvation to me through Christ. We’re thankful for the church allowing themselves to be instruments of God to us, for lifting us up in prayer—-like Aaron and Hur held up Moses’ hands when he grew tired (Exodus 17:12-14). When I wanted to collapse in sorrow, your prayers held us up. Thank you for reminding me that it is God who carries our burdens and it is when we are completely dependent on God, that it is His power that strengthens us.
My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9