While in my college courses years ago we discussed the topic quite often since I was leading into a career into the medical field. I often thought about if I was faced with the decision to abort because my baby had a major medical condition and most likely would not live, especially if it meant the child would have numerous medical procedures. But I had learned over the years that doctors are not always right, and they don't hold a magical book that can determine the exact date of expiration on a life.
When I walked into your office I was scared, overwhelmed and in medical mode as I watched the tech scan over my plump baby bump. I could see the blood flow was wrong in his tiny heart. But I also felt him roll around and I seen his tiny facial profile.
When you walked in you talked directly to the Ultra sound tech. Saying things like Critical Aortic Stenosis, when you smiled and said "Excuse us for speaking our "doctors jargon", I will explain fully in a minute.". Your face turned to utter surprise when I explained that I already knew what you were talking about, at which time you directed the conversation to me and explained how I was a very observant person to have seen that our 20 week fetus only had three chambers in his tiny heart.
You went on to explain that you have never seen a case this critical that did NOT turn to a condition called Hypoplastic Left Heart syndrome. That his left side of his heart that was extremely small and barely functioning would end up no longer functioning. That his Aorta was and would continue to become narrow/smaller. At this time we would have a list of options, none of which would be easy.
We could choose:
*Abortion
*Birth him and then take him home for compassionate care. (no interventions, just watch him waste away and eventually pass away.)
*3 open heart surgeries before age 4
*Heart transplant
Abortion, though, was your main focus. You continued to speak of it. Saying how this life would be hard on him. That it would be extremely hard on our family, as my husband and I were younger and we already had two younger children. You said he would have little to no quality of life. You said we should decided within the next 2 weeks because of his gestation.
I was pissed, and hurt at such a gesture. Here we were receiving life changing news and you were telling me I could just end it all with a simple decision of ending his life. A child that I had carried now for 20 weeks. I had felt him kick, seen pictures of his little face. There were options to help him sustain life and you just wanted to get rid of him. You gave us no hope, as you said most of these kids don't make it out of the hospital, and most never make it to Kindergarten.
3 years later I have begun to understand why you stated these things. Why you continued to bring it up, and why you seemed to be angered at the thought of us not choosing it.
I understand that at your place of work you are faced daily with the faces of grieving parents. Parents you have just told devastating news to. Parents wanting to hold onto their bundle of joy for as long as they can. Consumed with their emotions and "selfishness" of wanting to keep their child alive. Because who wants to face the scary part that most people never experience? I am sure you thought about the tax dollars "going to waste" for a child that wont make it anyways. You were not properly educated on the new technology and interventions that have been keeping children like our son alive now for the past 20 + years.
You were thinking of another young couple taking on to much, and another child being placed in the system because they cannot properly maintain care for such a fragile child.
I understand.
Your words stick with me daily.
When he came out of his first open heart surgery hooked to life support, hanging on the edge of life and death. I seen heartache.
When I seen his enlarged heart beating through his chest cavity because he was to swollen and unstable for his chest to be closed for 2 weeks. I seen hardship.
When I seen him cry tears but heard no sound because of his breathing tube. I second guessed my decision, just like you did.
When we made the decision to have him moved to a more equipped facility out of state and I was separated from my husband and children for four months. I stood by his side every day.
When I seen him smile for the first time, I seen quality of life in the form of happiness.
I watch him use his walker through our house, as he smiles and yells "I luu you mommy" I hear quality of life and see it with my eyes.
Though he had and has many daily struggles, he perseveres. He smiles daily, he laughs big belly laughs. He gives the biggest hugs, and makes our family complete.
You said most of these kids don't make it to Kindergarten, and we have seen that evident many times, sadly. BUT their lives where worth every second. Their smiles will forever be remembered. The memories they made with their parents will also.
Next week our sweet boy will be starting in the Preschool near our home. I will be handing him off again, but in the best shape he has ever been in. We know the reality of losing him at a moments notice, we have come close many times, but I know we made the best decision for him when we chose to fight. Any second we have or have had with him has been worth it, maybe not always the easiest, but ALWAYS worth it.
Even with his Critical Congenital Heart defect, mixed with the Hypoxic Ischemic Brain injury that occurred during his first surgery (that caused him to have Cerebral Palsy), he still continues to amaze doctors with his continual progress.
This type of life isnt everyones best choice, and we understand that. We also understand that it is your duty as a health proffessional to give us all options (even the uneasy ones), but our choice was best for us. I hope that one day you will have the pleasure to meet our sweet boy, and that you can be better acquainted with survival rates of children like him in the near future.
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