30 Days of PH: I Help My Daughter PHight Her Son’s Shone’s Complex

BioNews Staff avatar

by BioNews Staff |

Share this article:

Share article via email
A photo illustration for our
Michael (PHer)

Candace’s grandson, Michael, diagnosed with PH as an infant, is now 6 years old. (Photo courtesy of Candace Ead)

Day 12 of 30

This is Candace Ead’s story:

My daughter, at age 16, gave birth to her beautiful son, Michael, turning our world upside down. But at only 1 day old, Michael was diagnosed with a congenital heart defect known as Shone’s complex.

I immediately knew I had to be her advocate, so she could become his advocate and be taken seriously.

After two unsuccessful heart catheterizations, Michael had his first open heart surgery at 6 weeks old.

A few weeks later, he was discharged from Texas Children’s Hospital. And this is where Michael’s pulmonary hypertension story begins.

Nine days after being discharged, Michael had two non-breathing episodes at home. When we got to the hospital, he was in complete heart failure. Nurses couldn’t even move him without Michael having what we know now is a PH crisis.

Finally, Michael made it to heart cath, where his diagnosis of severe pulmonary hypertension was confirmed. There were many tears and lots of fear of the unknown. Two terminal diseases are a lot to take in. I ended up leaving my teaching career to help my daughter navigate this new world with Michael.

Michael was immediately started on treatment, which included IV (intravenous or into-the-vein) Remodulin. He was the sickest kid in the CVICU — the cardiovascular intensive care unit.

After Michael’s second open heart surgery, he began doing a lot better. Altogether, Michael has had four open heart surgeries and multiple heart caths. He was never expected to make it out of the hospital alive at 8 months old, but he is now 6 years old and thriving.

I definitely have PTSD and anxiety from his many PH crises (two cardiac arrests and coded multiple times), but I always try to keep those thoughts put away. I’m pretty sure his mom does too.

Pulmonary hypertension has been such a scary diagnosis because I just never know what or when something will happen to Michael. Nobody does. But looking back at everything Michael has gone through, and seeing how he still PHights today, makes me realize my grandson is an amazing warrior.

He lives life to its fullest, so I will too.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.

A Conversation With Rare Disease Advocates