Dear Heart Families,

I understand you are frustrated. I know how neglected you feel by the lack of red in a sea of yellow and pink and blue wristbands. It is maddening that more of our children die before even one birthday candle can be lit than children of all pediatric cancers combined up to the age of 18. The effects on our families has been emotional, physical, financial, and profound. Our tears from exhaustion, grief, and fear could flood another great lake in the heart of the United States. To quote the nurse on the morning of James’s death, “This sucks.”

That was nine years ago and it still sucks.
66 years ago the first surgery was performed to save a blue baby.
30 years ago parents of children born with half a heart were given a choice in their child’s treatment beyond compassionate care.
50 years ago a pediatric cardiologist identified a means to diagnosis coarctation of aorta without any equipment.

Heart moms, dads, and survivors have been investing bleary-eyed late night hours and every extra borrowed buck to make pamphlets, to write letters, to compete in marathons, to travel to legislators. All of this and more in hopes of getting more attention to this oft-not mentioned birth defect in obstetrical offices and delivery rooms.

Why, dear heart families, aren’t the clinicians that we are praising as life-savers engaged?

A suspicion was raised for James’s eventual diagnosis at the 20 week ultrasound. James had a discrete coarctation. Everything else was there and “perfect”. How is it possible to miss half a heart in an ultrasound?

I have been hearing stories for nine years how parents don’t learn their child has a heart defect until after birth, and often when it is too late and accompanied by an ambulance and EMT delivery of “heart defect”.
Enough is enough.
Sure the obstetrician doesn’t mention it. Sure they need more pamphlets in the office. But why are so many diagnoses for the most common birth defect which is on thee MAJOR organ being missed?
It doesn’t make sense that this keeps happening and the families keep churning out pamphlets and fundraisers.

Why so tolerant of over 70 plus years of research?
Of medical schools curriculum?
Of infections and embolisms and ventilator associated pneumonia when CMS doesn’t even tolerate these preventable errors anymore?
Why patient with faulty medical equipment when The Joint Commission even has standards that must be met?

When are you going to say ENOUGH!

Our kids die within their first year of life; many of those in the neonatal time period. For those lucky ones who survive to hear a birthday melody, their whole beautiful physical self is constantly compensating for the defect. They cannot afford to be given unnecessary challenges within the health care theater. These kids don’t have time for more tolerance of substandard care.

I will be thrilled when laws are passed mandating newborn pulse ox screening. But it scares me at the same time. There are unintended consequences to every action.
I know what it is like to unknowingly have your rights as a parent taken away from you when you hand your baby over for “repair of a [heart defect]“.
Heart parents, please don’t hand over all common sense and parental instinct in trade for wishful thinking.

Life stopped at eleven days for my fully insured, prenatally diagnosed, 8lb 4 oz baby boy with a discrete coarctation “not because of anything he was born with” (according to doctors who were involved in or reviewed his charts). His life was taken because I was not given a choice or a voice in his care.

It is not that “this sucks”. If I could I would tell that nurse, “this is enough.”
Speak up. Help now. All hands on deck. Stop the preventable deaths of heart babies now. They know how.

“I don’t lose my anger, I use my anger.”
~ Ted Stevens

James was born with a prenatally diagnosed coarctation of the aorta. I wish I knew then what I know now. So let me share it with you.

These are some things I have learned along the way to becoming a volunteer patient advocate.
Overall the best advice I have garnered was from a fellow lion mom whose son died from preventable medical errors. Helen Haskell, founder of Mothers Against Medical Errors, shared with me three over-riding principles to advocate for safe health care.

“Be patient, polite, and persistent.”
(Of course, when your child is in medical crisis – patience and manners are luxuries you don’t have. I will write more on what to do on that later.)

Growing up, Memorial Day was always about family barbecues, parades, wars, and a three day weekend.

In the wake of 9/11, I lost my son James in his battle against a minor congenital heart defect (coarctation of the aorta) to friendly fire (medical errors).

Memorial Day 2002 was the first year that the holiday brought on new meaning; though at the time and in the years since I wondered what was making me feel so melancholy. Nine Memorial Days later, I finally get it.

The flag.

When I drove into the beautiful grounds of Nemours’ Dupont Hospital in 2001 the hospital’s flag was flying at half staff. As I made my way through a seemingly endless maze of hallways and elevators, the walls were decorated with cheery child-friendly decor – cute dragons, animated animals, and bright primary colors. On 2B, the cardiac floor, each door that was occupied by a young patient was adorned with a 8-1/2 x 11″ white paper with enlarged child-friendly clipart and the child’s name. One girl’s room had a picture of a baby doll. Another little boy had a teddy bear. Someone else had a baseball and bat. I saw one with uncomplicated flowers. Another had a puppy dog.

Our room was among the first through the entrance way and to your left. Room 7.

James had an American Flag.

I hated it.

It made me feel uneasy. Queasy.

Scared.

There were alot of flags flying in October 2001 absent of any national holiday. We were a nation in grief and the flags flew at half staff.

I wanted to rip this flag down and put up something cute, cheerful, hopeful, optimistic. Something that would guarantee James’s easy recovery.

The week leading up to Memorial Day 2002 our country stood in silent formation around a mass of rubble and our TV screens to watch the memorial service for the victims of 9/11 in New York. That same day, my son’s gravestone was laid. That same week I experienced my extended family’s push on me to “get over it”.

James’s battle was over, mine was just beginning.

They did not know at the time of this huge emotional event happening in my life because I perceived they did not want to know. Nor could they possibly understand without having lived it themselves, the depths of my grief and my fragile emotional state as a result. No matter what the people around a grieving heart think, surviving loss means sharing it.

It has been nine Memorial days and each one has been trying. At least now, I understand my connection to Memorial Day is not too unlike any grieving person’s connection to the anniversary of their loved ones death or events that led to their absence from family gatherings. They have to share it. Most Americans have a father, brother, granddad, uncle, aunt, cousin, or sibling to remember or honor for their service to our country each Memorial Day. Americans take up just causes for the oppressed as our “modus operandi”.

Me too. I will buy a new, small flag at the dollar store today. While other nine year old boys are waving them alongside a parade, James’s will be flying above his gravestone. He was an all American boy, afterall.