As part of his Goldenhar Syndrome, Peter was born with a single- pelvic kidney. He has also had high blood pressure since he was minutes old. The most unfortunate part for Peter is the regular need to test his kidney function via blood draws. When he was a baby his electrolytes were all over the map, and we would sometimes have to draw labs more than once a week.
Given the situation, you would think that Peter’s veins would at least be easily accessible. But, no, his veins are so uncooperative that he has been sedated just to insert an IV for antibiotics. A pediatric angio specialist nearly gave up placing a PICC line after numerous attempts while he was under sedation, and it took over a week for neonatal nurses to secure a PICC line after his birth. The poor thing has been poked with needles all over the place. He’s even had an IV line placed in his head a few times. As a baby, Peter’s labs were drawn by tightly wrapping him up in blankets, strapping him to a board, laying him down under bright lights, and then sticking him numerous times with a needle.
In Peter’s early years, the one thing that reassured me was that he would, hopefully, have no memory of those horrific treatment rooms. As he got older and more aware, however, Peter’s fear of needles intensified. When bringing Peter in for labs, I was frustrated with techs who would insist that “they work with children all day long and are very good at their job”. In other words, “Mom, we got this. You are being a little overprotective and just need to let us handle this.” Eventually, I found the best way to avoid the torturous experience was to have Peter’s doctors order labs whenever he needed to be sedated. This happened frequently enough when he was 2-4 years old that we almost never had to draw labs while Peter was awake.
As Peter has grown and become stronger, it is nearly impossible to hold him down for anything he is unwilling to do. To help him work through his fear, I’ve tried everything from deep breathing techniques to sessions with a psychiatrist. I’ve also become more vocal with lab techs, making sure they really do understand what an extreme phobia he has and that he truly does have difficult veins. Peter, of course, does the best job of getting everyone’s attention since he is always in hysterics. This was the case on Thursday when it was necessary to draw labs as part of his nephrology clinic.
Knowing in advance that this was a strong probability, I contacted Child Life to see if someone could meet us at Peter’s appointment. In my experience, Child Life is the absolute best help you can request for your child. They work with Peter to address his fears through medical play, and they empower him with age appropriate education about his medical condition. For me as a parent, Child Life validates that I haven’t completely misjudged his level of anxiety. Their expert assistance also helps when I am upset and anxious before a procedure. I only wish we had asked for their help years ago instead of more recently.
In watching Peter at the clinic this week, I understand now more than ever how deep his fear is. It saddens me to realize how much he actually does remember of those early days, perhaps even as far back as his lengthy stay in NICU. I have come to believe that the body, in certain instances, holds deeper memories than the mind. While the mind can choose to forget, the body may still hold onto a painful experience. There is no question that our craniofacial children experience trauma as a result of managing their birth defects, often from a lifetime of surgeries and painful procedures. While we continue to manage our children’s medical care, however, we must remember and respect what they have endured.