Below is Goldie’s mother’s perspective on both her and her daughter’s experience with a complicated congenital heart defect called Shone’s Complex and how in-utero surgical intervention played a role in Goldie’s outcome. I want to thank Goldie’s mother, Katelyn, for taking the time to share this with us here at Hearts Like Mine. Please check out her profile on Instagram (@tinylittleheartspodcast) and have a listen to her podcast to hear other stories and perspectives related to congenital heart disease. I will attach the links to the bottom of this post!

From,

Garrett

Founder-Hearts Like Mine

You rarely get a heads up before life changes. You show up to the anatomy scan feeling like a seasoned pro—she's our third girl, after all. You lay there eagerly waiting to see 10 little fingers and 10 little toes. The genetic screening tests all came back fine, so there wasn't any indication that something could be abnormal. Little did I know that while we were planning our dinner menu for the evening, the sonographer already knew our lives were never going to be the same.

We received Goldie's official CHD diagnosis after meeting with the fetal cardiologist and having that first fetal echocardiogram: Borderline Hypoplastic Left Heart Syndrome. At that appointment, we discussed two possible paths forward. If her heart continued in its underdeveloped state, we'd likely be looking at a full HLHS diagnosis. If it allowed more blood flow through the left ventricle, she might salvage her four-chamber heart—a diagnosis of Shones Complex.

The amount of information we absorbed after that first appointment was exhausting. Two different scenarios ran through our heads, and in our position, the best plan was simply to wait and see.

We also discussed an in-utero procedure that could be considered if our case met the criteria. We did have our case sent to Boston for review, and mid-family vacation, we got the call. Our case was selected, and if we wanted to proceed, we needed to be there in three days. Timing with heart development and gestational period is critical for the in-utero procedure, and we were right at that window.

Goldie had her first heart surgery at 23 weeks gestation- an In-Utero Aortic Surgical Valvuloplasty. It was an attempt to salvage her four chamber heart. We felt it was our one shot to try– not many are presented with this type of opportunity and we had been praying for a miracle. We fully believe Boston was our miracle.

As we prepared for her delivery, we still weren't sure if the procedure had worked. It wasn't until they could perform an actual echo after she was born—to measure how much the left ventricle had grown and whether it was salvageable—that we'd know. Goldie was born full term and immediately transferred to the Children's Hospital for her first surgical intervention.

Goldie has undergone three open heart surgeries since she was born. Her official diagnosis is Shone's Complex, which indicates 4 or more defects on the left side of the heart. She has severe aortic stenosis, mitral stenosis, coarctation of the aorta and hypoplastic left ventricle.

As many heart babies do, Goldie struggled with weight gain and eating. She became fully dependent on her Ng tube and eventually got a G-tube around 6 months old.

Goldie has taught me so much about life. Receiving the diagnosis of a child with no cure is some of the most devastating news a parent can hear. Our job as parents is to raise our children to be good humans—but having to introduce your own child to pain and suffering before they experience anything else beyond your love is a weight that's almost too heavy to bear.

And yet, here we are. Two years in, and Goldie continues to defy expectations with her strength and joy. She's taught me that resilience isn't just about surviving—it's about finding the light even in the heaviest moments. She's shown me that a life shaped by challenge can still be full of laughter, connection, and profound love. Our journey isn't what we expected, but it's ours—and in many ways, it's made us more than we ever thought we could be.

Instagram: https://www.instagram.com/tinylittleheartspodcast/

Podcast: https://www.iheart.com/podcast/1333-tiny-little-hearts-podcas-274327798/