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To the Mom Who Found Out Her Unborn Baby Only Has Half a Heart

If I could go back to the day my daughter, Gracie, was diagnosed with hypoplastic left heart syndrome (HLHS), I would tell myself, “It’s OK to be scared. It’s OK to cry. It’s OK to be mad. It’s not fair. It’s not what you wanted. But you’re about to embark on the greatest journey of your life. You don’t see it now, but you will learn so many things.”

photo 2 (2) Undying love and dedication. You will sit for hours upon hours just staring at a 6-pound baby covered in wires and tubes and an open chest cavity with a beating little heart underneath. You’ll be unable to hold her or even really touch her. But there’s nowhere else you would rather be. You don’t know that some day down the road, that little girl who you can’t touch or hold will come running up to you, throw her arms around your neck and squeeze you tight. She will give kisses and hold your hand. She will rub your cheek when you’re sad.

Patience. You will wait for two weeks to hold your baby, and it will be like a minefield trying to maneuver around the wires and tubes. You’ll have to be careful not to pull off monitors and to avoid her incisions. It will take ten minutes with two people helping you to get her settled in your arms, and it will be worth every single one of them. Your butt and legs will fall asleep, but you’ll ignore it because you don’t want to put her back in the bed. After a few weeks you’ll be moving her and picking her up on your own, giving sponge baths and changing diapers. You’ll get to take her outside for the first time on the way to the car to go home when she’s 5 weeks old. You’ll work on breastfeeding over and over while people tell you it might never happen. It does. For 13 months. She grows. You’ll watch her learn to crawl and walk and run. She’ll tumble and fall and come running to you to kiss her knee. You’ll tickle her and she’ll laugh. She’ll cry and you’ll be able to soothe her.

Strength. The kind you never knew you had. You will learn ins and outs of the medications and what works for your daughter and what doesn’t. You will be her strength and her advocate. You will know how to stand up for her. You will show her what it means to fight and be tough. You will sleep with beeping machines on a crappy bed for weeks on end, going days without showers and hours and hours without eating. You will sleep holding her in your arms at home with one eye open, feeling her breathing. You will administer meds and monitor o2 levels every day and stay on top of weekly appointments. You will take her back for more surgeries, handing her off to the nurse to have her chest cut open over and over. And every time you will hold it together for her, because she needs you. She will say, “Mama” and want to share your food. She will go on walks with you and turn around to look at you and give you a huge smile. She will be happy. So happy. She loves her blanket and loves to listen to you read to her. She goes to appointments and lets the nurses take her vitals and listen to her heart. All with a smile. She is strong. You showed her how to be.

As you’re sitting on that table hearing that your unborn daughter will only ever have a half of a heart, that she might not grow up, that it’s OK to terminate. Remember this: just because she has half of a heart, it doesn’t mean she won’t live a whole life. You see that baby kicking and moving up there on that screen? Fight for her. And don’t stop.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.