The Diagnosis

We’ve been meeting with specialists, one who suggested terminating the pregnancy of our precious girl. I explained through tears that that would never be an option for us, no matter the results of the multitude of tests he conducted. We knew from the first “something isn’t right” that we would carry Annie and enjoy her life as long as the Lord would let us. Life and death are in the authority of the Creator’s hands, and we trust His numbering of ours and Annie’s days.

The specialist’s test confirmed a lot of good news: Annie’s heart defect is an isolated event. She has no chromosomal abnormalities or any other conditions that would indicate other problems. So it looks like surgery after she’s born could likely correct her heart problem. We rejoiced with this news! This means that she is expected to live to be born!

Another meeting with another specialist confirmed that to be true, but the heart echo on Annie also revealed that the fix isn’t quite as easy as we might’ve thought. Annie has a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).

This defect is quite severe and will require (at least) three open heart surgeries before she turns three. We can expect the first surgery to be within the first week that she’s born. How absolutely terrifying to think of our fragile newborn laying on that operating table. And how absolutely comforting to know that God has given these surgeons wisdom and compassion and skill for EXACTLY this situation.

And so we grieve the complexity of her condition. While we also rejoice in the ways that God has His hands ALL OVER our little Annie already. We are so thankful for the kindness of our OB who has shared his heart and his ethics about delivery and testing and treatment. “If you were my daughter, I would advise…” What provision from the Lord to have a knowledgeable Christian man as my caretaker through the pregnancy and an advocate for Annie’s life. We rejoice that God has provided a doctor for Annie in the same way. A pediatric cardiologist at Children’s who asked to take our case (a fellow believer in our community) and answer questions like a friend, speaking the truth in love about how to best plan for Annie’s procedures and also how to prepare for the grueling road ahead. We rejoice in God giving us Annie’s name, which means prayer, favor, and grace. We have seen God already using her life for His glory in the humbling number of people who are praying with us for His favor and grace in this situation. We’ve been able to share truth in answering hard questions of those who can’t understand why we’d continue a pregnancy knowing what will and may come in the days ahead.

We do not want this to be our story. But as we muddle through this dark alley, feeling like the walls are caving in around us, God is giving us BEAUTIFUL glimmers of His light to cling to making each next step and each new day possible in His strength.

“Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” -Lamentations 3:22-23

This is God’s story and that makes it good.