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Tips for Cardiac Parents, Part 1

Sep 25

Posted by: ACHA
9/25/2013 11:27 AM  RssIcon

By Yvonne Hall

A few months ago I was discussing with an author friend how I couldn’t seem to get to my writing. I didn’t know where to go with it. She immediately asked me one simple question that got the creative juices flowing again.

“What ten pieces of advice you would offer a parent of a congenital heart patient?” She then followed with, “That will give you the first ten chapters of your book.”

I may never write the book, but her words got me pondering—what are those ten gifts that I would offer to parents? My friend definitely hit a nerve with her profound question.

I’m certainly no expert on heart disease and I would never give advice. Rather, I offer my experience as a mother who received the gift of a CHD child. Somehow, along with a village of people, I’ve helped Lorie grow into an amazing adult with a passion and energy for her life and work that astounds all who meet her. But there were lots of pitfalls along the way and my wish is to help others to be aware of their options.

Lorie’s father and I were totally unprepared for our new normal. We had never entertained the thought that our baby’s health would be less than perfect, and like all parents confronted with serious issues, we stumbled through the first few weeks in shock, disbelief and confusion.

My first message to parents is easy. Insist on the best medical care available. My husband made our request clear to our family doctor and within days we were in The Hospital for Sick Children in Toronto, meeting with the “up and coming” cardiologist of the time. Dr. F. would become our guide and Lorie’s advocate for the next 18 years and I’m thankful every day we demanded the best. He was our rock.

Having said that, if he hadn’t turned out to be exactly who we needed to entrust with our daughter’s wellbeing, we wouldn’t have settled. It’s vital to feel comfortable with your medical team and be able to communicate freely with them. Make yourself known, ask questions, voice concerns and make sure you understand exactly what they are telling you. Your cardiologist and his team will be a major part of your world for years to come and it’s crucial you trust their decisions. It’s also critical they are willing to listen to you.

We discovered over the years that along with the best cardiac care possible, Dr. F. instilled the confidence, knowledge and tenacity Lorie needed to allow her to grow into a well-adjusted teenager and adult. He taught her to know her body, trust her instincts and question all drugs or treatments if in doubt. She learned it was her right to ask questions and demand the care to which she was entitled. He knew the time would come when she’d move on to adult hospital care and he would no longer be her voice. At one time, in her adult years, non-compliant was added to her medical records and we realized Dr. F. had taught his lessons well.

Any patients, but especially congenital patients, need to know it's OK to speak up for themselves. An advocate isn’t always available and they have to be willing to stand their ground when confronted by conflicting diagnoses or recommendations from outside medical practitioners and to say no until someone from their team can be present. Experts in other areas aren’t familiar with the patient’s personal heart history and since each condition presents its own unique set of issues, any diagnosis or recommendations are ultimately up to her cardiac team. These are lessons we learned from distressing personal situations that could have easily been avoided in the few instances we didn’t speak up.

Without demanding the best for our daughter, she may not have survived to transplant. The road has been rocky at times, but the results speak for themselves. Dr. F. treated Lorie with love, respect and hope. He released her at 18 to the adult hospital with tears in his eyes. I truly wish he could have lived to see the miracle he had such a large part in creating.

Yvonne Hall is a wife, mother, grandmother and life coach in training. She blogs and journals regularly as well as holds the position of personal assistant to her daughter, Angel Thinking author and CHD advocate Lorelei Hill. Yvonne’s intent in coaching is to encourage those in their transition years to embrace their age and value their wisdom while seeing aging as a new chapter rather than the last chapter. Yvonne has a lot to offer families struggling to raise children with CHD as well as women looking to grow wise gracefully.

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