Sunday, August 4, 2013

Dear Dr. Michael Karpf

Recently, Congenital Heart Defects have made their way into the spotlight. This article on CNN showcases the heartbreaking stories of parents whose children suffered due to the care they received (or didn't receive) at Kentucky Children's Hospital. The Executive Vice President for Health Affairs at the hospital, Michael Karpf, was quoted in the article calling for higher standards of care. Good.

He also mentioned his reasoning for not communicating well with families, which struck a chord with me.

Here is my open letter to Dr. Michael Karpf.

Dear Dr. Michael Karpf,

I am writing to you as a parent of a child with a congenital heart defect. My son is a survivor, having been born with Tetralogy of Fallot, and having had his surgical repair at Seattle Children’s Hospital.

He is doing wonderfully. He is growing and thriving. I am beyond thankful for the skilled surgeon and incredible staff that treated my son and so, saved his life.

Choosing a hospital was not an easy decision for me. I found out about my son’s defect when I was only 16 weeks pregnant. I immediately began researching children’s hospitals, prepared to relocate so my son could receive the best care. I moved to Washington from another state, and delivered him into the care of Seattle Children’s Hospital. Their transparency made me comfortable, their statistics gave me hope.

Unfortunately, as you recently admitted to the media, your hospital cannot say the same. This is bothersome, but I appreciate your working towards a better program. What bothers me most is not the fact that your pediatric cardiac surgery mortality rate is high, though this is also unacceptable and heartbreaking. What bothers me most is your inability to provide information to the people who need it most.

We know that even the most skilled surgeons lose patients. We know that open heart surgery carries risks, and mortality is a reality that we face every day.

Withholding information because you deem us, as parents, too ignorant to understand, is offensive.

One year ago, I was not aware that a heart had four chambers. I knew of an aorta, but not of its function. Like most parents, I didn’t have to know these things. I didn’t have to know what a ventricular septal defect was, because it wasn’t threatening my child’s life. I didn’t want to receive hands-on learning experiences, but I did.

I respect your degree, and that you know much more about the medical field than I do. I also know that you are underestimating me, and the other parents who have had to adjust, learn, and grow in order to provide for their children, what other parents are able to provide without such accommodation. Health, safety, and quality of life.

When you say that most people would “have a hard time understanding data,” I feel the need to remind you, that we are not most people.

Most new parents cannot intricately describe their child’s heart.  Most new parents do not take their new babies home with a rigorous schedule of medications, measured feedings, and a calendar full of appointments to keep.

Most new parents don’t schedule outings around RSV/Flu season and confine themselves to their homes when their children are interstage. Most people will never utter the word, “interstage.”

Most new parents don’t sit nervously at cardiologist appointments, waiting to read the number on the pulse oximetry monitor, wondering if the number will be lower this week, than the last. Most new parents don’t understand how beautiful a blue “100” on a screen can be.

Most new parents don’t console their infants as they lie in hospital beds, screaming out in pain from lab draw attempts and scratching at incision sites. Most people would never understand what it’s like to give up your expectation for healthy, and instead aim for alive.

I understand that you have an incredibly important job to do. You are in the business of saving lives. I respect your expertise and your desire to make the changes necessary to ensure that the children being treated at your hospital are given every fighting chance at life.

 I ask that you respect my job, as the mother of my child. I ask that you respect my expertise, as no person in this world is a better expert on my child. Do not underestimate my ability to understand, because if there is anything in this world that ignites the fire of a need to discover, learn, and know…it is the health and wellbeing of my son.

If I am having a hard time understanding the data, it is your job, sir, to help me understand. Do not write me off as incapable. Rephrase, explain in detail, and use me as an important tool in my child’s care.

I reserve the right to make educated decisions to keep my child well. You are the educator, and as any good educator, it is your responsibility to provide all the information necessary so that we can do with that information as we see fit. If at any time you are not 100% confident in your abilities and the abilities of your team, the patient should be the first to know.

I urge you to not only make the changes necessary to improve your hospital’s surgical outcomes, but also to reconsider the manner in which you communicate with your patient’s families.

Transparency matters. I am confident that though most people have never been where I stand, most people would demand the same.


Most Sincerely,

Jenelle Walter