Dear Doctor, My child is not here to satisfy your curiosity

After spending three hours in a clinic today, I have realized that there are doctors who are there to gather information, but offer very little in return. Today, O and I went to a Down Syndrome clinic attached to a major university hospital. Upon reading a description of the clinic on their website, I still wasn't sure what they might be able to offer that our pediatrician and other specialists haven't already offered. However, I was game, because the more tools in the toolbox, the better. Right?

Unless of course it's that one hideously expensive tool that you use only once and find you'll never have a use for again...

Two hours into our appointment, and we had yet to meet with the doctor, and I was realizing that this wouldn't likely be a multi-use tool. So far, we had met with a mentor mom (an idea that I thought was FANTASTIC) who is parenting an adult child with DS, and with the doctor's assistant, who went over the report that our pediatrician had sent to their office. So, at the two hour mark, I stuck my head out the door, flagged down a nurse, and casually mentioned that we had been waiting quite a while, and perhaps we should leave. The doctor appeared within seconds. The doctor came in and took great interest in O, and re-asked all of the questions previously asked by her assistant. She then went over all of the specialists we have already seen and then asked, "What are you hoping to get out of this visit?"

:blink:

"Well, what can you offer for O's care?"

"Well, we offer a multidisciplinary approach..."

"Ok, what does that mean? We've already seen cardiology. We know we need a second opinion in G.I. He sees feeding therapy once a week."

"Feeding therapy? Are you happy with them? We can offer feeding therapy along with our nutritionist."

:blink:

After covering all of the bases and realizing that we have either already seen every thing she can offer, or we already have a referral, the doctor stood up and said she'd like to see us back in two months. She then asked if we'd like to talk to the nutritionist, since O's weight is an issue and we're dealing with him eating a gluten-free diet.

"Sure, I'd love to, but we've been here two and a half hours already. It's past his lunch time and creeping into naptime."

"I'll bring him a snack! I'll be right back."

After talking with her about how O can't drink most liquids and thick foods are difficult to swallow, she comes back with a juice box and a package of Sunbutter. *sigh*

So, after a few more minutes, we meet with the nutritionist to go over O's diet. She realizes that O and I are weary at this point, and tries to make it as quick as possible. We talk through his daily intake, figure out his average calories, and even she admits that she doesn't have any new information to give us. She hands me her card and tells me to call her any time I have any questions. I assure her I will. She shows me towards the appointment desk so that I can make the two-month follow-up appointment with the doctor we just saw. Once I was sure that she had headed back to her office, I took Baby O, kept walking past the appointment desk and headed home.

Adopting Baby O, we knew we were entering a realm doctors and therapists that we haven't encountered with our other children. Thanks to an amazing pediatrician, we've been able to hit the ground running with O's care and have been aggressive in meeting some of his needs. We've been dealing with cardiology, gastroenterology, feeding issues, ophthalmology, with more to come. I greatly appreciate a doctor who gathers as much information as possible, and then works with us to make the decision that further care is needed, or decides that O is doing well and further care isn't needed at this time. I also realize that the Daddy Guy and I had more than the average time to prepare to parent a child with special needs. Not only that, but we chose that path, we weren't thrown down it, so we were prepared to meet issues head-on.

I don't appreciate going to a doctor's office and providing them with more information than they can offer me. Baby O and children like him are NOT a statistic. They're not a culmination of facts that you can put together and turn into a report. These doctors are dealing with real parents with real babies, many who have real health issues. Walking out of there, I was angry for the new moms who have just found out that they're headed down a path they didn't plan, and realizing that many of them may have the same experience we just had. I know some of them don't have the same tools that we have already been given, so I hope that they can use that clinic to get the help that they need. I also hope that they can look at an experience, realize that it wasn't beneficial, and feel strong and confident enough not to put themselves or their child through that again.

 

 

Today's visit was like that one hideously expensive tool in the bottom of the tool box. I feel like the doctor definitely garnered more information from us than we were able to obtain. Hopefully, one day, I can look in my toolbox, see that tool, and realize that it has more uses than I originally assumed.