A very dear facebook friend, and fellow blogger suggested something to me... she said: why don't we reach out to other communities, to spread awareness of the issues of CHD'S AND STROKES? I thought that sounded like a good idea, so I turned around and said... will you do a story on your blog about these issues... well, she gladly said "yes", I feel very honored that our friend Bonnie, has now spread awareness to others, who may of never heard of these issues... and she included Jilly and a precious little "heart friend", Izzy in her story... including pics! Thank You Bonnie!!!
From A Writer's Kitchen
Monday, March 8, 2010
Hearts and Roses
roy 1960
They named her Elizabeth Rose. She was exquisite. My ten-year-old self was so jealous of my best friend's new baby sister. I was also jealous of the large (by a child's measurement) play house in her backyard. There was a tiny front porch and window boxes and a rose bush planted on each side of the three steps leading up to the porch. The roses were pink. Mr. and Mrs. M. planned to have a large family and built that two-room playhouse to fuel the imagination of their children. There was an easel for drawing and lots of pencils and crayons. There was modeling clay refreshed every few weeks. And, what I liked most, a reading corner with two comfortable chairs.
The first time I saw Elizabeth Rose, she was wearing a sheer white dress (no onesies back then) and lying on a pale pink baby afghan. There were matching pink booties on her tiny feet. She had a lot of very dark hair. I wanted to hold her. Mrs. M. simply said "no, she's sick". She didn't look sick to me.
Elizabeth Rose never played in that wonderful little retreat. She died when she was not quite a month old. She was born with a heart defect. My mother told me, years later, that the doctors really didn't know how to treat Elizabeth's heart so they sent her home to die peacefully.
That was forty years ago. Today heart defects are still the most common birth defects. In the United States, approximately 1 out of 100 infants are born with heart defects every year. In most cases, scientists still do not know what causes an infant's heart to develop abnormally.
There are two little "roses" that have recently blossomed in my garden. They are:
Jillian Rose (Silly Jilly)Jilly is three years old. She's perfect in every way except for her heart. Jilly was born with a complex congenital heart defect (CHD) and suffered a stroke when she was fourteen months old.AND
McKenzie Rose (Izzy)
Izzy just turned two. Look at that face. It's the face of a toddler about to get into something that's probably a "no-no". Typical two-year old? Yes, in every way except for her heart. Izzy was born with CHD and Tetralogy of Fallot.
One never knows when these problems might strike very close to home. And, one of these "Roses" might grow up to be the scientist that discovers the cause. One might grow up to discover the cure. Regardless of what they do in the future, they most certainly deserve to grow up.
CHD awareness is very important for prospective parents because the sooner a CHD is discovered, the greater the chance of survival. While around 1% of all babies have CHDs, routine testing is still not done and babies are lost. If all new parents asked for a painless test called a pulse oximetry for their newborns, more CHDs would be caught and fewer babies lost. The pulse oximetry test doesn't actually detect the CHD but does lead to further testing (echocardiograms, heart ultrasounds, etc.).
Approximately twice as many children die from CHDs each year than from all childhood cancers combined, yet funding for pediatric cancer research is five times greater. All of this research needs to be generously funded and CHD research funds need to be greatly increased. That research is what will, hopefully, allow these precious little "Roses" to thrive, bloom and live to adulthood.
I like to keep my posts light and happy. However, I'm also interested in how my garden grows. I want to keep these little "Roses" growing and thriving for years to come. I'm hoping that awareness and research will lead to a whole garden of healthy little hearts!
Thankfully, most parents only have to rely on their family and friends for support in raising their children. Parents of chronically ill children find they need a much wider support system.
Please help me get this information out. Until recently, I had very little knowledge of the severity and frequency of CHDs. If my post helps just one family with an early diagnosis, I will be very grateful.
Support for Children's Heart Foundation is crucial to research into CHDs.
Support the Ronald McDonald House. It provides shelter to many of these children and their families. If there's one in your neighborhood, volunteer.
I'm told that most blood donations in the U.S. go to heart patients.
The March of Dimes also supports research into CHDs.
For more information, visit www.childrensheartfoundation.org
From congenital heart disease to childhood cancers to seizure disorders, research is ongoing and in many cases, seriously underfunded.
And, I'd be remiss in not pointing out that many of these parents continually face the insurance industry and what they will and will not cover.
