When we were first given Faith’s diagnosis, I had never heard of the term. A quick Google search gave me enough information to know that the condition was “fatal” and “irreversible,” that treatment was aimed at controlling symptoms, and there is no cure.
We have a trusted mentor at our church who is a cardiologist, so I knew he would be honest with us. I presented him with the paperwork detailing her diagnosis in hopes that he would say that it really wasn’t as serious as we thought. Instead, he confirmed what we had been told.
Before beginning her adoption paperwork, I spoke with a handful of other doctors and specialists who confirmed that maintenance of the condition “for as long as her heart continued to beat” would be our goal. Her first 6 months home, she saw 3 cardio/pulmonary specialists who all confirmed the prior information we had received. They did a good job explaining to me in a matter-of-fact way what we should expect. Even though intellectually I knew what we had “signed up for,” I couldn’t help but burst into tears at one of the first cardiology appointments. I guess somewhere deep down I was still hoping that things were actually better than we had thought.
Last March, Faith had a repeat heart catheterization. I told Daniel that morning, “Wouldn’t it be great if this doctor tells us that her condition isn’t as serious as we thought and they can do something to treat her?” But as I previously blogged about that experience, we had “no such luck.” The heart cath just confirmed what we already knew. I remember grieving heavily and feeling silly for hoping that things would be different.
I read about her diagnosis that most people have a significantly lower life span, but there are some cases of people, when managed aggressively, who live into their 6th decade. I latched onto that bit of hope and started praying that God would grant her at least 6 decades of life. I could picture her as a 65 year-old little gray-haired Chinese lady wearing wire-rimmed glasses and lecturing to a roomful of college students.
Still, I couldn’t help but be reminded that we, in fact, had not been aggressively treating her condition. She had been in China with no medical attention for 8 years. I mustered up the courage to ask one of her doctors how long he suspected she had been living with Eisenmenger’s Syndrome, and he said probably about 5 years.
Yesterday the girls were out of school for the holiday, and we went to Vanderbilt for Faith’s 3 month follow up. The first thing I observed was that her baseline oxygen saturation was 5% higher than it has always been. She does a test where they measure how far she is able to walk in a 6 minute time frame. She walked further yesterday than she had 3 months prior, which was further than 3 months prior to that.
Her Echocardiogram showed that she is having less Right to Left shunting. A couple of her labs had slightly improved from a year ago. All of this was great news and sounded very positive. But then the doctor said something that I still can’t fully wrap my head around:
Her condition has shown some reversibility. I am not convinced that she is in Eisenmenger’s Physiology. She’s not there yet.
Reversibility. Something that I did not think was possible for this condition. As I have prayed for Faith, I knew that God was going to answer as He knew was best. I reasoned that even with this diagnosis, He could add unexplained years to her life. But never did I dream that the diagnosis would be reversed!
I understand that she still has a very serious heart defect with resulting pressure in her lungs. But the news that we received yesterday is a huge step in the right direction!
I am currently praying specifically that her heart would be strong every day and that the pressure in her lungs would be removed.
I tried to explain how wonderful all of this progress is, but I don’t think she quite grasps it yet. On the way home, a nice man behind us in line at the gas station paid for our snacks and drinks. She was more amazed at that than anything else that happened that day. Which is kind of the way I want it—for her to be a little girl who is focused on little girl things like playing dress up and choosing a treat to enjoy on a road trip.
Boy, is she going to have a story to tell one day. But for now, she can concentrate on less serious matters.
“I will sing to the Lord all my life; I will sing praise to my God as long as I live.” Psalm 104:33