It’s time for another edition of Good News/Bad News! Emmie and I had mother/daughter dermatology appointments today, which is NOT a family tradition I really recommend.
Good news: My dermatology appointment was just fine. Peachy.
Bad News: I was a bit blindsided by Emmie’s appointment.
Emmie had 3 birthmarks when she was born: a “storkbite” on her forehead, a red mark on her chin and a very big, red blotchy area on the back of her head. We were told the back of the head probably wouldn’t go away (not a big deal, she’ll have hair… eventually), but that the two on the face would likely fade. The one on the forehead did, but the chin one has pretty much stayed the same. At her 18 month checkup, her pediatrician recommended we go see dermatology about it.
Honestly, I was so unconcerned about it that I really almost didn’t schedule the appointment (I know! ME, not making a dermatology appointment!). Only after Kaiser called me to follow up and sent me a letter noting that they had a referral and no visit did I call and schedule it. I really, truly and honestly believed the dermatologist would take one look at it, declare it perfectly fine (not growing! not changing! really not that noticeable!), and send us on our way.
I sort-of-purposely didn’t google anything about “birthmarks that don’t fade” because I didn’t want to scare myself. And also: It was clearly Nothing! I think denial was strong in this one.
So we get there, the derm is great, clearly loves kids, and literally less than two minutes after he walks in the door, he tells me it’s a port wine stain. OK, fine. Then he says, “They aren’t named that because of what they look like now. It’s because of what it will look like when she gets older.” He then tells me that it’s due to a defect in something that stops too many capillaries from growing and that it will worsen over time, getting thicker and more purple. It also can bleed easily as she gets older too. While there is a treatment, it will never completely go away because the underlying problem with the capillaries will never go away. Luckily, it is easier to treat early on, like in Emmie’s case, and early treatment should prevent some of the other complications.
So that was how I ended up holding down my crying, scared baby, trying to sing “Row, Row, Row Your Boat” to calm her without letting my voice crack while the doctor zapped her with a laser gun. I know he said it doesn’t hurt too much, and it really was VERY fast, but it was still the saddest thing I’ve done to my baby so far.
Even worse was when we had to come back to the same office a few hours later for my visit. She was fine until we went into the examination room and the doctor came in, when she started crying and needing me to hold her, while looking at the nurse with VERY mistrusting eyes. Poor, poor baby.
She now has what looks like a very dark bruise on her chin, which is 100x more noticeable than the original mark, but hopefully it will help lessen it as the bruising fades. She has to go back every 6-8 weeks for more zapping (I can’t WAIT for those visits, let me tell you), until we decide it’s “enough.”
I’ve felt very sad about this all day, but honestly, if this is the worst that happens to her, I will feel very lucky. It’s small, supposedly treatable, and truly not debilitating or disfiguring.
I think I was sad because I was utterly unprepared for this. I wasn’t ready to imagine Emmie at 15, self-conscious about something on her face. I wasn’t ready to imagine her having to get treatments for this, for anything, for the rest of her life. I wasn’t ready to admit there might be something “wrong” with my perfect baby.
That, that last bit, was very powerful for me to think about. Every single parent I work with has had that moment. Their perfect baby has some diagnosable “problem,” something that needs to be fixed, something that might not go away. Hell, sometimes I’m the one giving them that information!
I certainly do not think you need to be a parent to be a good clinician or SLP, but I must say, this parenting gig has given me a huge heaping of empathy for some of what the families I work with go through. I need to remember that no matter how old a child is, how obvious something may be to me as a professional, or how far off the walls a child might be bouncing, that child is still their parents’ baby, so I need to be gentle and compassionate.
It has also helped me to think more concretely about Emmie’s future. I think most parents probably have visions of various stages of their children’s lives, but I honestly can say that I have not and do not. It was much, much too painful for me to think of any kind of future for Emmie for too long, since I had no idea if that vision would include me or not. So I’ve lived in the moment and the immediate future, without much thought of preschool, let alone high school. But this has made me realize that Emmie will have a future, and decisions that Peter and I make now can have an effect on her quality of life years down the road (you’d think that a parent would figure this out BEFORE their child is 18 months old, but apparently that’s not always true).
Is lasering her the right thing? Will this prevent more issues down the road? Will she thank us or curse us?
Being a parent is hard. I’m just really glad I’m here to do it.
My favorite line, "Being a parent is hard. I’m just really glad I’m here to do it." So true! I'm so glad your visit was ok and that Emmie has you to hold her through the treatment 🙂 Just remember, she won't remember them later! Love you both!
I won't go into my own story here, but know that I feel your pain, frustration, and numbing confusion to find out not-so-great news about your baby. I even feel the joy that can seem so wrong in times when it's necessary to hold a screaming baby–joy that I have a child (who is still perfect in my eyes), and joy that what's been diagnosed is something that can be attended to. And know that the decisions you make about your baby's welfare are the right ones–you made them with the best of information that you had available to you, and you didn't make them lightly. Even if you change your mind down the road about a treatment plan, you are still making the best decision–and your past ones weren't "wrong" ones. I think that's what parents are: people who do the best they can for their kiddos with the information they have available. And you're one awesome parent.
Rob Hill said:
Whew. I’m so glad that was her bad news. You and dermatology appointments and bad news anywhere are far scarier than I can handle. I know this is another challenge for you, and for her, but I really am not worried.
She has you and Peter for parents, and she will always have seen what you went through. So she’ll never lack for love or confidence, ever. She’ll be beautiful and strong. Her mom & dad & uncle will see to it.
Mark Shafer said:
First, let me say, I have been a practicing dentist for 20 years. I have seen kiddos with PWS left untreated and when they get old enough that kids ask about it, it’s much harder to treat. While I do do this treatment , I have seen it be very effective in almost every case.And, as you alluded to, it’s also functional because these areas are easily injured as a teen or adult. You are definitely doing the right thing for your precious baby….