Meeting Senator Hatch & Saying Goodbye to Grandpa

Last Thursday, I was fortunate to meet with Senator Orrin Hatch of Utah to discuss congenital heart disease and a bill (S-621), The Congenital Heart Futures Act, which has been read twice in the Senate and referred to the Committee on Health, Education, Labor, and Pensions.

Senator Hatch is a ranking member of this committee and has the power to make great things happen for education and research concerning the #1 birth defect in our nation. There are 1.3 million Americans with CHD. He was very cordial and friendly. I had a confidence boost when his assistant Annette said she enjoyed one of my albums. I told her she has good taste! (LOL) In addition, we talked about the Senators music since both of us have worked with a few of the same people in the music business.

I invited Dr. William McDonnell to attend the meeting with me. He is an adjunct professor of law and Director of the Center for Children’s Environmental Health Law and Policy at the University of Utah. Although he is an attorney, the doctor spends most of his time working in Primary Children’s Medical Center’s E.R, when he’s not competing in triathlons. Dr. McDonnell is a great guy and has dedicated his life to improving the quality of health care for children in our nation. He is also married to my adult congenital heart doctor Angela Yetman. I’m sure he has been well informed of the challenge children with CHD face as they transition to adulthood. My own personal transition was challenging and at times I felt lost within a system doctors had no control over.

A section of the bill that concerns me for the rising generation of children with CHD is the following phrase:

“Less than 10 percent of adults living with complex congenital heart disease currently receive recommended cardiac care. Many individuals with congenital heart disease are unaware that they re quire life-long specialized health surveillance. Delays in care can result in premature death and disability.

“The estimated life expectancy for those with congenital heart disease is significantly lower than for the general population. The life expectancy for those born with moderately complex heart defects is 55, while the estimated life expectancy for those born with highly complex defects is between 35 and 40.

“Despite the prevalence and seriousness of the disease, Federal research, data collection, education, and awareness activities are limited."

There is no federal funding to educate families affected by congenital heart disease, the #1 birth defect. I want parents to feel assured there is a clinic and pediatric thoracic surgeons available in every state when their children become adults. Fortunately, my community has a wonderful adult CHD clinic under the direction of Angela T. Yetman. We still had to overcome some challenges getting at pediatric thoracic surgeon to operate on me as an adult. I believe this will be worked out in time so others have no hurdles to jump over. If you want to help make this happen in the lives of more than 1.3 million people with CHD click here to let your state Representative and Senators know. Their office reads these letters and your voice will be heard. It would also be interesting to have you leave your comments here and I'll forward them onto the Senator's office.

When we arrived in the Senator’s office Richard Piatt of KSL News was interviewing the Senator about the recent health care bill the Democrats passed through the House with no Republican support. The Senator's personal assistant asked me if I mind being filmed with the Senator? I made it clear I was not there to discuss health care for Americans. I was there to talk about a separate issue that just happens to fall under the health category. Richard was very kind. I had seen him in the lobby and he asked if I would comment on congenital heart disease. I believe the story KSL ran on the 10 o’clock news made it clear why I was there even though it was interwoven into the health care. Here is the link to watch the story.


My Heritage and Saying Goodbye to Grandpa Layton

Publicly, other than voting in a booth I have never been very political. I usually share opinions with family and a few trusted friends. I can tell you how grateful I am to enjoy the benefits of living in America.

All of my ancestors are immigrants from Europe and Canada. Our ancestors made this country special. We carry with us their names and some traditions. Are we living up to our heritage?

My great great grandparents Mary Joy and Edward Snelgrove were in trouble with immigration laws in the late nineteenth century. They settled in the Utah territory as Mormon pioneers from England and never filed their paperwork for citizenship. They didn’t know how to do it. Thankfully, federal officials worked with them and they were able to stay. The Snelgrove's were hard working people who created jobs for other folks. Edward started one of the first piano stores in the Salt Lake Valley.

From Mary Joy and Edward came my grandmother Mona Snelgrove Layton, the sweetest and most faithful woman on earth. She grew up struggling through the depression and understood a time when our country was in really big trouble. It seems like back then honesty was an attribute everyone cared about having.

We celebrated my grandfather’s legacy this past Saturday at his funeral. He always taught us, "Be honest. Your integrity is all you have." Grandma cared for him almost 70 years and raised a wonderful family who make a wonderful contribution to society.

Photo: My Grandfather, Captain Alan W. Layton, The United States Army

Grandpa was from “The Greatest Generation” who fought in World War II and was sent to France as a commanding officer and was in the midst of intense military action. He was seriously wounded in the Battle of the Bulge in 1945 and returned home a decorated veteran, receiving the prestigious Purple Heart.

At the graveside service members of our nation’s military paid tribute to my grandfather folding the American flag and handing it to my grandmother. One soldier played taps as the snow fell like small white feathers from heaven. Buried with my grandfather are a few of the shell fragments in his finger and leg from the War.

I love this country. We need to carry the torch passed to us from the greatest generation. They stood for hard work and sacrifice. I don’t have answers to solve our national's problems but I believe we can work together to work miracles.

Photo: Folding the flag at my grandfathers' graveside service

I appreciate Senator Hatch taking the time to meet with me to discuss congenital heart disease. He met with many people on that day and throughout the week discussing a variety of issues. Some media suggest congressmen and women are home for the holidays and doing nothing. But, I admire Senator Hatch, my other state Senator Bob Bennett and Representative Jim Mattheson for using their time to meet with the people they represent. I was honored to have a rare opportunity.

Overall, every nation needs responsible, creative, and honest men and women to lead and citizens to encourage our leaders. "The supreme quality for leadership is unquestionably integrity. Without it, no real success is possible, no matter whether it is on a section gang, a football field, in an army, or in an office," said Dwight D. Eisenhower.