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  • Writer's pictureLisa Alice

Infectious Disease and the Social Contract.

When I think about infectious disease I think about Gabriel. Most know that he had several complicated heart defects. The defects were serious enough that he needed several surgeries during the 16 months of his life. He was immune compromised. Because Gabriel was compromised, we were careful with him. Many family members never got to meet him, and several saw him only a very few times, because they lived out of state.

Joe and I were not able or willing to travel with him. We knew then, because we lived with the evidence of his health and the gift of his life, that, he was critically fragile, not likely to live long. He suffered greatly when he was sick with a cold, the flu, or the consequences of his surgeries. He was blue most of the time. Poor oxygenation of the blood due to the defects. This means his blood did not have enough oxygen in it. He struggled with energy for the last month of his life and was on oxygen. His pulse ox would rest in the mid 70's to low 80's. The human body can withstand a gradual lowering of oxygen in the blood, and the reality is that organs including the heart, lungs, brain, and kidneys are compromised by the lack of oxygen. The reason Gabriel was on oxygen was because the weekend before he was supposed to go in for open heart surgery, he got RSV, which is a respiratory infection that can be fatal in children under the age of two. He was in the hospital for 9 days and his surgery was postponed for a month, after he fully recovered.

Gabriel had the surgery and survived it. I’m sure, looking at all of the detail above, you must be wondering why we proceeded with the surgery when he had so recently had RSV? He could not wait. In addition to his diagnosis of Tetralogy of Fallot with pulmonary atresia, he also had pulmonary stenosis. His pulmonary artery was bout 2cm. It was not wide enough to allow enough blood flow to support his functions. he was running out of time with the equipment he was born with. After open heart surgery, we gave him some time to recover. He never left the ICU. He had a balloon angioplasty. Basically, a balloon is inflated inside the pulmonary artery which widens the artery. A stint (a little metal tunnel) is put in to help the blood flow. During the angioplasty, Gabriel experienced an aneurysm inside the sack of surrounding his heart. It did not burst, which is good news. And, he got an infection which got trapped in that aneurysm.

Infectious disease is a tricky business. The infection he got was surprising. I did not know that a yeast infection could kill you. He got a yeast infection in his blood. Candida. We tried all the new antibiotics first. Then we tried all the old antibiotics. Nothing worked. We let him go, when we realized we were prolonging his suffering, knowing the infection could not be arrested.

I have realized over the past few weeks I have been triggered by my experience with Gabriel and my frustrations with the lack of understanding.

So, understanding what, exactly?

Gabriel had a feeding tube down his nose. He had re-flux and vomited a lot. We got push back when we asked, he be held in an upright manner. We encountered resentment, anger. We were new parents and were confused. Now I understand that we were dealing with fear. Maybe the narrative looked something like this, “I don’t know how to do a broken baby. I am an expert at raising children, but not this child. How do I do this right?” I did not know how to calm their fears because I did not know I was dealing with fear.

Gabriel was our focus and we found friends and family, close family, moved away from us emotionally. My father, with zero malice and zero insight said, “this doesn’t happen in our family.” We didn’t understand this. He was the first grandchild. He was so funny and beautiful, and I thought it was because I had failed by bringing an injured child into the world. He was not physically perfect. He had a broken body, but his spirit was magic. A unicorn. What I have discovered in reflection and with grace is, how do you attach to a baby that is not going to live past the age of five? How do you feel competent in a situation that is completely alien to your experience? How do you comfort parents that you know you can’t lie to and you know you can’t prevent their suffering?

It is human nature to turn away from reality when the suffering you must face is unbearable. The suffering we will encounter for the next few years will be exceedingly difficult. We have a responsibility to our social contract with each other.

Many of us are fragile. I could name the ways we are physically compromised, and you can just look around at your friends and family.

Emotionally we are fragile. Depression, anxiety, PTSD symptoms, suicidal ideation, increase in bipolar symptoms, substance abuse, symptoms have increased in the past 6 months.

This disease this COVID19 virus is highly contagious and it is very weird. It is so new and so weird we don’t really know the sort term effects of contracting and recovery, let alone the long term organ and vascular damage it appears to be doing. We must take this seriously. We have the medical and health care personnel to manage this health crisis if we manage the number of people needing ICU beds at any given time. Hospital beds are generally at about 70% during an average year. That leaves only about 30% capacity to handle the influx of COVID19 Cases. If we don’t take care of keeping our numbers low until we get a vaccine, we run the risk of crashing our health care system which is struggling, as it is.

Because we are all suffering. Because we are all more alike than we are different we must take care of each other. We cannot write off human life; seniors, medically fragile children, medically fragile adults, over worked nurses, doctors, phlebotomists

, respiratory therapists, anyone who is Essential and serves us daily. We are engaged in a symbiotic relationship with each other.

I believe in prayer. I watched my mother pray over my son, Gabriel a week or so before he passed. While she was praying over him his blood pressure dropped down to normal. <3 <3 We must have faith that the prayers that we have sent out to God has been answered with the gift of masks to keep our germs to ourselves. <3 We have been gifted with health care provides who love us and will do everything they can to save our lives, God forbid we end up in the ICU. <3 We have been gifted with science to help develop a vaccine. Please understand what these gifts are and take them for what they are, God’s help to us.

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