There are some days that are burned into your memory. You can remember these moments with such clarity. A moment for me was when doctors told me that my son would never walk and would never talk. And, with that information, I knew he would never catch frogs in a pond, he’d never jump into a lake in the middle of summer and he simply would not experience childhood the way I had always envisioned. As soon as someone tells you that your child will not do these things, your world is crushed and you don’t want to believe any piece of it.
Perhaps more painful than being told that your newborn child would not do many things, is the subsequent judgement that came from healthcare professionals. Medical professionals who were supposed to help guide me with my son’s condition, instead blamed me for it. These moments of judgement are also burned into my memory.
The condition my son experienced was severe hyperbilirubinemia – jaundice. Yes, a lot of children have jaundice when they’re born and for many, their bilirubin level doesn’t reach high levels. But, for my son – and countless others, it reaches levels that threaten their lives. For some, if they survive, they are crippled with a wide variety of symptoms including cerebral palsy and serious hearing issues. The condition – rarely diagnosed because of the legal ramifications of mismanaged jaundice – is called Kernicterus. It can mean a lifetime of disability.
Knowing that your child has suffered a major medical emergency within the first few days of his or her life is one thing – but, knowing that it may have affected his or her development is beyond scary. It feels like you’re looking into the black abyss wondering what’s about to come next. And, while you’re forever concerned about the well-being of your child and looking to medical professionals as a soothsayer or crystal ball reader, their judgement for what happened to your child is perhaps most devastating.
I had to take my son to a pulmonologist for a few weeks after he was born. Sending him home with a monitor was perhaps, one of the most difficult experiences – especially since they said my son very well could have problems breathing. It was, essentially, they only way they would release him – with a monitor. On one hand, it gave us peace of mind that it would go off in the middle of the night and we could administer CPR if he had stopped breathing. For my husband, an Iraq combat veteran, the beeping of the machine sent him into a panic. I would have to remind him that our son had pulled the leads off and chances were he was just fine.
The monitor was certainly concerning – but, getting it removed by the pulmonologist came with an incredible amount of judgement. There I was, sitting in a little room with an 8 week old baby, worried because I needed my son to be okay – but, also was nervous that they would not take the monitor off of him. I sat there patiently, when the pulmonologist. Dr. Baker looks at the chart, then looks at my baby, then looks at the chart. “Oh, this was the baby with the bilirubin level of 44.”
“Yes,” I replied.
“I saw him when he was in the NICU” said Dr. Baker.
“Yes,” I said – with no memory of him ever having visited my son or talking to me during our stint at the NICU.
“How does a baby even get to a level like that?” he said, looking at me.
“Yes, it was very high.” I said waiting for reassurance.
The doctor looked my son up and down, then looked me up and down and said, “How did you not even notice the jaundice? How could you let it go as high as it did? I’ve never seen a case like this in all of my years as a doctor – like 30 years!” He waited for me to respond, but I said nothing. He continued “I just don’t know how you could have let it go that high.” And, with that he got up and left the room.
He later returned to tell me that I could not remove the monitor because there was something “mysterious” in the readings and he needed more data. I left the office feeling crushed, feeling responsible, and still so concerned about my son’s well-being.
About a month later I returned and his physician assistant, (who I was very glad to see) removed the monitor and said my boy was very healthy. There simply was no reason for the monitor to remain. There was nothing wrong with his breathing.
In hindsight and with a lot of therapy, I realize now that the doctor’s reaction was simply wrong. I was not to blame for a rare issue – severe hyperbilirubinemia. I also realize that the doctor’s reaction was simply not professional. The point, however, is that medical professionals need to remember that what they say, how they react to serious emergencies like this has a significant emotional effect on the family of the individual. In essence, we need medical professionals to be supportive and comforting. Emotional support is often needed from medical professionals – particularly after traumatic events like severe hyperbilirubinemia.
To learn more about Kernicterus and mismanaged jaundice, please visit http://www.pic-k.org (Parents of Infants and Children with Kernicterus) and http://www.kernicterus.org