Achondroplasia has become a normal part of our lives. Of course, for many other people it's something new, interesting, unknown, maybe even scary. I expect awkward interactions with strangers or people who have no experience with dwarfism. But sometimes I forget what a rare condition it is, as evidenced by our encounters with medical staff at various hospitals. Here are some of the stories I haven't written about yet...
General awkwardness.
When my high-risk doc went to work the day I had *the* ultrasound, I'm pretty sure she had no idea she'd be telling a confused and scared pregnant woman and her husband that their baby probably had something like achondroplasia. So I have no idea how prepared she was when it came time to break the news to us. She started by telling us that some people are just short, like she is herself; that she's of Irish heritage, and many Irish people are short; that leprechauns are part of Irish folklore; and that sometimes there are real-life leprechauns. Yes, my OB doctor used leprechauns as a way of trying to tell me that my unborn daughter had dwarfism. But it was just too confusing and I didn't really understand what she was getting at. She then asked if we knew of the TV show "Little People, Big World." Okay, THAT was something we could understand. Don't get me wrong - I loved this doctor. But looking back, I cringe at that discussion and sincerely hope that was the first and last time she brought up leprechauns with any of her patients. Ever.
Assumptions.
Then there was the maternity ward. When I had my c-section, I'm sure that word got around to the nurses that there was going to be a newborn with dwarfism on the floor that day. We were wheeled to our recovery room and found our supply cart stocked with preemie diapers. Those are for babies that weigh around 5 pounds or less. Madeline was north of 9 pounds. That's big for any baby. I'm assuming a well-intentioned nurse heard "dwarf baby" and thought "small diapers." A slightly embarrassed nurse brought us diapers two sizes larger that actually fit her.
Notoriety.
When Maddy was about one month old and we were back at the hospital for yet another checkup, we passed an employee that looked familiar. She obviously recognized us, too. In fact, she remembered Maddy - by name. She was one of the nurses from the maternity floor. Maybe she just had an awesome memory and remembered the dozens of other patients from that month, too. But Maddy was a special one.
Curiosity. (Or gawkers.)
I've already told the story about Maddy going to immunizations. Two techs gave the shots while two other techs...stood there trying to look useful until it was over and they scattered. Then when Maddy was older and went to a different facility for x-rays, the x-ray tech went on and on about how cute Maddy was and how awesome her hair (then in a mohawk) was. Next thing I know, she's getting a couple co-workers to come and see the cute baby with the cute hair. We went back the next month for different x-rays and had the same tech. She did the same thing with two different co-workers. Granted, Maddy is adorable and her hair was something to behold. But I know that seeing the "little baby" was probably part of the appeal. I guess I expected more tact from hospital staff. However, I've worked in hospitals and therefore should have known better. And even when Maddy had surgery at a hospital with a skeletal dysplasia clinic, some of the ICU nurses did a similar "check out the cute baby" routine with each other. Turns out that most of them didn't even know what achondroplasia was.
Big mystery.
Those nurses aren't the only medical professionals we've come across who know next to nothing about Maddy's condition. When Maddy was still a newborn I brought her along to one of my own doctor appointments. It was with a family physician I had never met before. He was asking about Maddy and I told him she had achondroplasia. After a few minutes he asked, "And what does a diagnosis such as that mean for her?" Translation: "I have no idea what that word means." That was the moment I knew I'd be educating a lot of people in our lives.
Maddy has been seeing a GI doctor who has no experience with achondroplasia. But he never pretended to know more than he did. In the middle of our first visit, he left the room to research some things online. It disturbed me at first that he so freely admitted his lack of knowledge. But he is just the kind of doctor we need: someone who is willing to do the research and talk to other doctors. Incidentally, he was the one who ordered the test that caught Maddy's spinal cord compression. And I've said it before but I can't emphasize how fortunate we've been with Maddy's primary caretakers who are not dwarfism specialists. We hit the pediatrician jackpot twice.
Soon I'll tell some stories about the reactions of strangers. Whether they make me giggle or groan, these encounters sure do keep our lives interesting.
1 comment:
Hi - this was an interesting post. My 2 year old was recently diagnosed with pseudoachondroplasia so I am starting to enter the world of trying to explain her dwarfism and what it means. As you've described, most don't know anything and it's hard!
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