An Open Letter to Politicians

Diagnosis: Pulmonary Artresia

By K. B.

I am writing this letter to you to share the story of my daughter Emilee Nicole. I am a life long Maryland resident and until recently was very proud to live here. My husband and I have a two year old little girl and decided that it was time to try again. We were very exited to learn that we would be having another little girl at our 21-week ultrasound.

What should have been a routine visit turned out to be our worst nightmare when the ultrasound picked up something unusual with her heart. The doctor said it was probably nothing and not to worry, but as a precaution he referred us for another ultrasound at a neo-natal heart specialist. A week and a half later we had our appointment with the specialist and we were informed that our baby had a serious heart condition. He was not sure exactly what it was but it did not look promising. The specialist referred us immediately to John Hopkins for further testing. Thanks to him we were able to get an appointment one week later.

At John Hopkins, a level 3 ultrasound was performed the result indicated the problem to be much more severe than initially determined. Our Emilee had two very severe heart defects, severe pulmonary artresia with tricuspid regurgitation. In laymen terms she was missing a chamber of her heart. Unfortunately, the chamber that did not develop was the chamber that fed her heart oxygen. This was causing the chamber above the missing one to swell up with the blood. Her heart was not pumping and made that chamber two-to-three times the size of her entire heart. We were informed that this was a severe and very rare congenital heart defect.

Apparently pulmonary artresia occurs once in every 10,000 live births. This was not a genetic condition. This condition was caused spontaneously when her cells did not form correctly in the womb. This is also a condition that is very difficult to diagnose prior to the 20-week ultrasound because the heart just isn't big enough to see in detail.

When they told us what kind of life our baby girl had in store for her it was like a bad dream. She would most likely not survive natural labor and would have to be delivered via C-section at John Hopkins. She would be blue from lack of oxygen and would have had to be immediately hooked to life support. She would have required a minimum of three surgeries to even enable her to take her first breath. After the surgeries her lungs would have still only been at a quarter of normal capacity and she would have been brain damaged from the lack of oxygen.

They were not sure how long she would live after the surgeries. One week, one year or five years. The only thing that was certain is that she would have had a very short life that would have been spent in and out of hospitals. I did not want to put my Emilee through the torture of surgeries, constant hospital visits and (if she made it long enough to walk) to watch her sister run and play from the window because that is something she would never be able to do. I also could not put my other daughter, Kacey, through being constantly thought of second because we had a child fighting for her life only to have her taken away at a young age. So we did what we thought was the only way our baby would be at peace. We decided not to proceed with the pregnancy. I was 24 weeks when I was seen at John Hopkins.

This is when I felt that my state turned its back on my family and me. Maryland does not allow any late-term terminations for poor prenatal diagnosis. My high-risk doctor tried to have it brought before the ethics committee at John Hopkins but because this was not genetic, just a fluke of nature, they would not even consider it.

I had to fly to Kansas to have the procedure done. It was a five-day out patient procedure that cost us almost $9,000 after all was said and done. I am hurt and angry at the state of Maryland for taking away my right to allow my daughter to die in peace. I loved and wanted my baby very much. I loved her so much that I would rather her go back to God than suffer for even one day. I was appalled that Maryland did not have a quality-of-life addendum to the late-term termination law.

I don't expect the state of Maryland to alleviate the emotional toll the loss of my baby has brought upon my family and me, but they could have helped by allowing this procedure for Marylyand patients. At least then my insurance could have eased the financial burden. Instead, not only have I been emotionally devastated but financially crippled as well.

I ask you think of the Maryland families that have had to go through this, and those who will face similar situations in the future. We are not careless teenagers who make a mistake, but families who love our children so much that we would never dream of allowing them to suffer.

I do not wish this on anyone, but for a moment put yourselves in our shoes. How would you have reacted if you knew from the moment your little baby came into this world he/she would suffer greatly, without hope of recovery? Would you want them to be at peace? Would you have expected your home and family to support your decision?

We can use our God given intelligence to find cures for cancer, for delaying the progression of AIDS. How wonderful to be able to use our intelligence in science which can point out to us when something has gone horribly wrong with the conception, enabling us to make a decision to send our beautiful babies to God instead of letting them suffer terribly here on earth. Please share my story with your fellow politicians. There are many of us out here who had to endure this trauma. Please do not continue to make us destroy ourselves financially so our babies can be at peace.


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