“There’s something wrong with your baby’s heart.”
In 2014, 22 weeks into my pregnancy, a routine ultrasound revealed severe anomalies in the baby’s heart. A rare congenital heart defect called transposition of the great arteries meant that her heart was incompatible with life.
My husband Ivan and I sought a second opinion the very same day, but the doctors all drew the same conclusions: Children born with such heart defects don’t usually live very long.
In my baby’s case, the corrective action would likely be a series of very risky, very expensive open heart surgeries, spread out over a lifetime.
“You’ll have to consider your options carefully,” the doctor said. “You can also choose to terminate the pregnancy now.”
I remember going to bed that night blanketed in grief. Something that gave us so much joy and pride was now the source of pain, anger and confusion. My husband held me and we cried and we prayed.
I was a writer by profession, and prided myself on being a wordsmith, but that night I could barely find the vocabulary to say anything to God.
I pleaded, and promised, and committed my faith, but in my heart the only words I truly had were: “God, why?”
Long after Ivan fell asleep, I lay with my face pressed into a damp pillow, crying for the child we had not yet lost.
I dreaded going to church. I was afraid of having to explain, to see pitying looks, and I was also afraid of having to pretend like my world wasn’t shattered.
In the days after that, we spoke to our parents and mentors and met our church pastors. I was brought up in a strong Christian home and I knew in my mind that abortion was wrong. But when push came to shove, I wavered. We went for the mandatory abortion counselling at the hospital to keep our options open.
The first Sunday after the diagnosis, I dreaded going to church. I was afraid of having to explain, to see pitying looks, and I was also afraid of having to pretend like my world wasn’t shattered.
Most of all, I was afraid that I would be too angry with God to worship, and that He would know.
In the midst of it all, hope broke through. This verse in Proverbs 3:5-6 was almost as if God were speaking specifically into our situation. It says: “Trust in the Lord with all your heart, and do not lean on your own understanding, in all your ways acknowledge him and he will make straight your paths”.
I always thought those people who still praised God in adversity and personal crises were so heroic, like the guy who wrote It Is Well With My Soul after his whole family died, or the Hillsong worship leader who led Desert Song after her miscarriage.
But that Sunday, when it finally came my turn, I realised that it’s not hard or heroic to turn to God when He is all the hope you have left. It’s desperation, and it leaves you broken and humbled.
I sang-sobbed my way through the words of Kari Jobe’s You Are Good, my mouth declaring the kindness and goodness and mercy of God, trusting that my heart would soon follow.
Against all odds, Johanna was born in April 2014 with a team of doctors waiting on standby in case she needed immediate intervention. But by God’s grace, some other accompanying “defects” also allowed her heart to function well enough to postpone surgery till she was bigger and the procedure less risky.
Johanna has had two heart surgeries since, and each time – when we were gripped by the fear of losing her – God reminded us to trust Him as we read His word.
“This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it.” (John 11:4)
“But for you who fear my name, the sun of righteousness shall rise with HEALING in its wings.” (Malachi 4:2)
These verses gave us tremendous courage each time we had to hand our precious child over to the surgeons, and hope during the long nights we stayed up listening to the beeping of life-support machines in the ICU.
Indeed, God has been faithful in not only preserving her life, but blessing our family with life so abundant in a way we didn’t think was going to be possible when we first received her diagnosis.
Sometimes pain has no good answers this side of eternity, but we have come to know the Good Shepherd. The one who has laid down his life, the one who leads and guides us to green pastures, stills waters and even through the darkest valleys of life.
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters. He restores my soul.
He leads me in paths of righteousness for his name’s sake.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me;
Your rod and your staff, they comfort me. (Psalms 23:1-4)
Today, Johanna is a precocious toddler and an older sister to heart-healthy 10-month-old Emma. If you didn’t see the long scar down her chest, you’d never have guessed this running, jumping, fast-talking kid had a heart “incompatible with life”.
Her doctors were so pleased with the outcome of her second corrective surgery that they took her off her daily medications – she is now completely medicine-free!
Surely goodness and mercy have followed us – even before life as we knew it began for Johanna.