“I’ll do my best.” Moira promised to me as we wed in 2006. She explained to me. “How can I say ‘I do’, when I have no idea what is in front of us? At this time all I can really promise is that I am here and I will do my best, which is 100%, but I can’t predict the future.” When we were married we loved each other, YET we still did not know each other (or even ourselves fully). We had not had gone through a significant struggle together. The diagnosis of our unborn baby was a tornado that came out of nowhere and changed that. We had no warning, no preparation, and no knowledge of what that tornado was. It felt like a freight train coming right at us so loud I could not hear any other noise. The tornado made a direct hit. Everything was wiped away except for the two of us standing looking around asking ourselves, “What do we do now?”
Our history would help inform our next actions. Moira was thirty-six when she “finally” got married, as her mother would say, and thirty-seven when she became pregnant. Her pregnancy was considered a “geriatric” pregnancy, one with higher risk because she was over thirty-five.
Moira did not grow up knowing she wanted to be married or have kids. Nor did she feel pressure to hurry and get pregnant after our wedding. Moira had other life interests – she had fulfilling work and enjoyed running and other hobbies. She knew she could be happy without a husband or a child. She did not actively “not want” children either. “If it happens, that would be cool, if it doesn’t, so be it.”
At Moira’s age, she knew the challenges. She had watched friends struggle with infertility and multiple miscarriages. She was aware of the increased risk of conditions like Downs Syndrome, among others. Moira admired couples who were so committed to parenthood that they sought out fertility experts, going through rounds of in vitro and experiencing an emotional (and physical for the woman) roller coaster. Yet, she was equally sure that route was not for her. Moira chose to put her energy elsewhere.
Moira was also amenorrheic, having her period only a couple times a year, for many years–another potential barrier to pregnancy. With all of this in her history, Moira declared, “I was wonderfully surprised when I realized I was pregnant just a short time after we were married. In fact, it took me about 10 positive pregnancy tests to fully believe it was true–and before I even mentioned it to Erik.”
Her first reaction to her pregnancy was to be cautiously optimistic – knowing the risks – particularly in the first twelve weeks. “I am Scots-Irish, after all. We can’t get too excited about anything or something bad will happen. Think potato famine.” Moira contained her growing excitement about this new and unexpected life chapter. At the same time, she didn’t hide her pregnancy. Moira let family and friends know right away. “They would have figured it out on their own as soon as they saw me without a glass of wine anyhow,” she explained. Moira was prepared for the very real possibility of a miscarriage. She attempted to put those thoughts aside and tried to enjoy, but not get overly excited about the early part of her pregnancy.
As Moira grew and her body changed, she became more invested in this child. She began to relax. “I started to enjoy the feeling of pregnancy. I let myself smile at the idea of impending parenthood. It felt good. It felt exciting to think about parenting with Erik. He was so full of optimism and energy – it balanced and centered me. We would have fun!” Moira declared.
“I don’t remember many dates, but I do remember December 26th .” Moira said. “The day our world shrunk. The day we felt dread, fear, anger and lost. The day we started to fight for our family.”
This fight was not only about this growing child inside Moira. It was also about our future, our life. There was urgency to make a decision because in two weeks time ending the pregnancy would no longer be a legal choice for us. The additional information that would help us make a decision, genetic testing, would not be available until after the legal time had expired. Information we needed to give us more insight into the potential long-term challenges. In addition, regardless of the potential genetic issues, the main defect, CDH in itself had high risk of major quality of life issues and mortality.
The day after the diagnosis Moira went into go mode. She was an Associate Professor at the University of Minnesota researching exercise physiology and bone development. She had about twelve graduate students, experts at research, whom she advised. They went into action and within twenty-four hours Moira had a stack of research papers explaining what Congenital Diaphragmatic Hernia (CDH) is, how it happens (they don’t know), clinical outcomes, and the hospitals in the world that specialize in it. Moira became obsessive. She studied all the material and spent her time on the computer researching the data, the issues, and the possible procedures. She was arming us with information. We became overwhelmed.
Babies with severe CDH have consistently low survival rates. When the diaphragm is severely herniated (or not fully formed), organs such as the stomach, intestines and liver migrate up into the chest cavity. This reduces the space in the chest cavity for the lungs to form properly. In our child’s case, the stomach, a portion of the intestines and a part of the liver had all moved up into the chest cavity. In addition to reduced space for the lungs to form properly, the heart was also being pushed out of place, increasing the possibility of heart damage.
Imagine opening the door to your car to get in and the entire inside of the car is filled with basketballs. Now, without taking the basketballs out, try to drive to work. It is so tight you can’t get in your seat to sit down. You can’t reach the ignition button to start the car. It is going to be hard to drive to work. Our baby’s upper chest was like the car, but instead of basketballs, his chest was filled with other bodily organs that were not supposed to be there. There was no room for his lungs to grow and develop. As a result, he was not going to be able to breath. He wouldn’t be able to start the engine, let alone drive.
Where do we go from here?
Go to previous entry here.
Go to beginning of the story here.
Go to the next entry here.
Go to why I decided to write the story here.