I want to say something before we dive into everything below. I understand that everyone has something going on in their life, this is just something that has been going on in mine. This has been one of the hardest things for me to talk about, still is, but I’m trying to be better.
It is almost a week after the birth of our third child, our second daughter, that I receive a call from her pediatrician’s office. It was our favorite nurse calling and the tone of her voice is very lighthearted, as it always is, so I don’t think much about why she was calling. “Hey, umm your pediatrician is out this week but the pediatrician filling in would like you guys to bring your daughter into the office for another blood test.’ Me, being a little confused, I asked her the first question that any parent would ask when getting a call like this ‘Is everything ok?.’ She replies ‘Yes, but the pediatrician would just like to get another test.’ I tell her ‘Sure’ and that ‘we will come in tomorrow to do another blood test if that works for them,’ and then I end the call. My wife asks me what the call was about, a little perplexed, I tell her that the pediatrician wants us to come in for another blood test for the baby. We sit there for a minute looking at each other, look at our new baby, and then kind of shrug the call off. I can’t help but to start having a bunch of random thoughts on the why and the what, but I also try not to over think things as I tend to do.
The next day we make our way to the pediatricians office to get the requested blood test, and to meet with the pediatrician that is filling in for our regular pediatrician. He sits us down and tells us that he wanted to run another blood test on our baby because he was not sure about the results of the newborn screening blood test. We don’t get many answers as he tries to reassure us that he is just being cautious and just wants to get another test. I am now very confused as to what is going on at that moment. I really want to ask the tough questions, but I am also terrified at what the answers to those questions might be, so I force myself into not asking. Leaving the pediatrician’s office my head is filled with so many thoughts that I don’t hear the questions my wife is asking me as we drive home. My brain is all over the place thinking every little thought about what all this could mean, bouncing back and forth from being positive to thinking the absolute worst. I am angry with myself for not asking the tough questions because I know that by not asking those questions, I will be drowning myself in thoughts until we get real answers. I try to ground myself by repeatedly thinking about how everyone at the hospital said she looked great and how her newborn screening scores were all great. Like some parents, I was frequently terrified during the pregnancy of our children and this one was no exception. I would be stuck worrying about something being wrong, that at times it was hard for me to just enjoy the process. With this pregnancy, like all the others, we completed every test, genetic test, and screening that was available and they all, fortunately, came back with good results. So I continued to ask myself, what could possibly be wrong?
A few days after we do the second blood test, and before we have our follow up appointment with the pediatrician, we receive a letter in the mail from the Department of Health about our initial results from the newborn screen. I read that letter several times to try and comprehend all the words on the page, but they just don’t make sense. My mind convinces me that we are receiving this letter in error because of the mistake with the first blood test at the hospital, and that this is all just a misunderstanding that will be cleared up once we get the results from the new blood test. A few days later our test results come back, and our normal pediatrician asks us to come in to discuss the results. We load the baby into the car and make our way to the pediatrician’s office. We try to make small talk during the ride over in an effort to alleviate some of the ‘heaviness’ in the air, still thinking that everything is OK, and this will all get cleared up shortly. We arrive at the office, check in, and are greeted by our favorite nurse who takes us back to the room.
It’s so quiet in the room. The only sounds I can hear besides my own heartbeat and the soft breathing of the baby, are the shallow rumbles of talking or cries coming from the other rooms in the office. There are two light knocks at the door, the door opens, and our pediatrician comes in and sits down with us. We start with the usual conversations about families and kids, general questions about the delivery, questions about how we are doing, and questions about how the baby is doing. We answer all the questions but admittedly I am not really focused on the conversation. I have always been a ‘prepare for the worst’ type guy, so my thoughts are just focused on getting to the point of why we are there. .I am also trying to mentally prepare for both the best and worst case scenarios at the same time. The moment finally arrives in the conversation and there is a pause in our pediatrician voice as she takes a breath. Now my brain stops, goes silent, and I’m steady focused because I know that it is now time for the real conversation. My heart begins to beat faster and faster as I notice the subtle vibrations rippling through my shirt as I sit on the edge of the seat while gripping the handle of my daughter’s car seat.
She is very direct. She tells us that the pediatrician that was filling in for her while she was out did not need to order an additional blood test. The results from the first test were correct and doing another blood test was not going to change that. In that moment I feel all air leave my body and I see the hope that I was holding on to slowly evaporate as I listen to what she says next. ‘I’m sorry to tell you, but the blood test confirmed exactly what was in the letter that you already received said, your daughter tested positive for a blood disorder.’
(I also want to take a quick minute to acknowledge our pediatrician during this time. My family and I were beyond blessed to have had someone like her take care of our children as long as she did. When all this started with our daughter, she took the time to learn more about her condition and provided insight in comfort when she could see us struggling mentally and emotionally. We are forever grateful for you.)
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