Sydney McFall   |   December 2, 2019

Adult CHD Patient Parent’s Perspective — Patty’s Story

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Adult CHD Patient Parent

Patty Hansen is the mom of Meghan Roswick, making her a CHD patient parent. Meghan is 28 years old, leading a beautifully adventurous life, and is a HLHS survivor. But — things could have taken a much darker route if not for Patty. 

Growing Concern

When Meghan was born she was sent home from the hospital just like any other baby. Her parents and doctors believed her to be perfectly healthy. However, when she was six days old, Patty noticed something was not right with her baby. Meghan felt cool and was crying a different, very high pitched cry. Her breathing was abnormal and she wasn’t eating normally. Concern growing, Patty took her back to the hospital.

She then heard the shock of her life — Meghan only had half a functioning heart. Doctors urged her to choose compassionate care, in other words, allow her baby to pass away without any intervention. The Fontan series, the current temporary treatment of HLHS, was newly developed and widely considered experimental when Meghan was born. However, her parents decide to go with the surgeries to give her a chance at life. “I had an unexplainable confidence that Meghan was going to not only survive but completely and totally thrive,” Patty said. 

No Google

Being a heart parent in the modern world is challenging and traumatic enough. However, Patty didn’t have easy access to information online or support groups like today. There were no doctors experienced in the Norwood procedure because the treatment was so new. “These days when I question something in the medical world, I look up the information on the internet. I find out who I can connect with, read articles to give me insight, watch videos, etc. In those days I did not have any of that,” says Patty. Her main source of information was Meghan’s surgeon himself.

Raising Heart Kids

Patty’s thoughts on raising heart kids is insightful and built on years of personal experience.

“I’ve always tried to remember that my job as a parent was to raise the most capable, empowered, confident, independent, good hearted adults that I could. Our instincts as parents are to keep our kids protected.  When you are handed a new baby with a life-threatening medical condition, that instinct goes into the most massive overdrive you can imagine.  I made it my mission with Meghan to do the very best I could to balance protecting her when I should, but allow her to do things where I knew she was risking falling, failing, getting hurt and being disappointed when it was safe.  I felt that if I protected her based on my own fears I would raise a woman who would be fearful and not have the confidence to go out into the world someday and take it on. Making sure doctors addressed question to her, I had her fill out her own medical forms, I had her help figure out directions when we were in a new place, etc.  I let her experience life to the fullest I could and tried to help her realize she had so much capability.”

Patty shows great courage with not letting her fear take over her parenting style and instead embracing life fully. 

Mental Health Matters

Being a heart parent, either new or experience, is challenging. They are faced with mortality everyday. This can be hard for everyone involved in a heart warriors’ life, mentally and emotionally. Patty is a strong advocate in the heart community and believes that mental health is just as important as physical health. “I believe … when a child is born with any chronic health condition, mental healthcare has got to become part of standard care right at the beginning.” 

Much has changed over the years when it comes to CHD and being a CHD patient parent. Being the parent to someone who is on the upper-age spectrum of CHD patients at only the age of 28 is hard but has changed Patty’s outlook on life. “You appreciate life differently. You know to not take things for granted.” She is living her life that way and is an inspiration to many heart parents and heart warriors with her beautiful perspective one some of life’s hardest challenges — life with CHD. If you would like to read more about Meghan’s story check out our blog written from her perspective.

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