“At my 20 weeks anatomy scan, my fiancé and I were told our baby would be born with bilateral clubfoot and I was being referred to a high risk OB… “just in case.” At my 26 week high risk appointment, my ultrasound was taking a lot longer than the previous ones.

“I’m not seeing everything I need to see with babies heart. I’m going to refer you to a pediatric cardiologist.”

I was gutted. First her feet, now her heart?
I went in for a fetal echocardiogram where we quickly received a prenatal diagnosis of Tetrology of Fallot with Pulmonary Artesia.

Josephine was born at 37 weeks via c-section in September 2023. She was intubated at 5 minutes of life and her diagnosis was confirmed. TOF/PA, bilateral clubfoot.

She was born a lot sicker than we were prepared for. She remained intubated until day 3 of life. Underwent her “full repair” at 7 weeks old. The next day, a nurse came out to the waiting room to tell us that they were actively resuscitating Josephine, placing her on ECMO and if we wanted to see her, we needed to come right that second.

We had to scrub up to enter her hospital room. We saw her surgeon scrubbing up. We heard nurses yelling, “I need this.” “I need that.” We saw her for about 20 seconds before we were told we needed to exit the room. I don’t think we’ve ever cried as much as we’ve cried that day.

Josie remained on ECMO for 5 days. Her chest left cut open for 10. Sedated and intubated for 14. I spent my 22nd birthday in the hospital, unable to hold my child. It was so hard.

ECMO was exactly what her little body needed to rest and recover. She had a 99 day hospital stay. Since then, she’s had 3 cardiac caths and is going for her 4th one in October. She has developed pulmonary hypertension. We recieved a genetic diagnosis called KAT6A Syndrome. Only about 500 cases around the world but it explains every single one of her health diagnosis. She is dependent on her gtube for nutrients and supplemental oxygen at night.

There were days we were uncertain if she’d live to see her first birthday. She’s turning 2 next month.

This journey has not been easy. But I would do it a million times again if it meant I got to be Josephine’s mommy. She has made me such a better person and given me a whole new perspective on life.

If you’re in thick of your CHD journey- I hope Josie’s story can be a testament that things get better.”