Today I’m merging two questions that are seemingly unrelated, but turn out to be pretty closely linked in my mind.

“I’m pretty sure you have had best and worst experiences interacting with others regarding Leah. Can you share them, and say what made the best one the “best”, and the worst one the “worst,” and how the worst could have been better if…? (For educational purposes)”

And this question from a pediatric neurologist: “I see a lot of DS kids, partly because they have a higher incidence of infantile spasms than the general population (my specialty is epileptology). What would you like your doctors to know or to do for you? What can I do better?”

My favorite moments with Leah happen when we are just giggling hysterically together at some silly thing and she randomly gives me a hug. As far as interacting with others, my favorite moments happen when I see her playing with other little kids who see her as a peer and not as a baby. An example: Last month, we were in the waiting room at Leah’s clinic when two of her little buddies arrived – twins, almost exactly Leah’s age. As soon as they came into the waiting room, they ran up to Leah and hugged her, and the three of them skipped off to play, holding hands. A few minutes later they were all lying on their stomachs in a little pinwheel on the floor, with Baby Staci at the center of the circle. All three kids played with the baby doll together as their mom and I watched them and laughed at their antics.

Those are my favorite moments.

My not-so-favorite moments nearly always involve feelings of helplessness and frustration, and the vast majority of those moments happen with medical professionals. I certainly get fired up and frustrated over issues that happen at school, but there’s something about being at the doctor’s office or the hospital that adds an added layer of helplessness to the mix.

I can’t tell you how many stories we have either from my own history, from Leah’s history, or from other parents, that basically follow the same storyline: “I spoke to the doctor/nurse and they didn’t listen to me, and the condition escalated because they brushed me off and now I’m dealing with the repercussions.”

So let me tell you two stories that exemplify what folks should NOT do.

First, I’ll share a scene that I observed on the Peds floor during our extended hospital stay. I was walking to the parent room when I saw a mom poke her head out of her child’s hospital room. The nurse call light was on, and inside the room, the child’s monitors were ringing with loud alarms and flashing lights. When I came out of the parent room a few minutes later, the mom was still there, now frantic and calling out, “Is anyone going to help me?” I went to the nurse’s station and told them someone was calling for help. They said, “Oh, the kid is fine; he’s just moving around a lot in his bed.” I asked, “Does the mom know that? Because she’s standing outside her door asking for help.”

Next, I will share the absolute worst experience we had with a healthcare professional during our time in the hospital. For a full recap, you can read the original account at http://leahvalerie.com/can-it-be-a-long-week-when-its-only-tuesday, but the short version is that during a night shift in the PICU, Leah had a nurse whose ego outweighed his concern for her wellbeing. He refused to listen to me when I told him that her suction tube wasn’t functioning (putting her at risk of aspiration). He lied to the other nurses about whether or not he had fully checked the patency of the tube. When I tried to get help from a doctor, he told the doctor everything was fine and sent her away before I could get a word in. It even got to the point where I pulled out the suction tube to force the issue, and he still just shoved it back down Leah’s throat without further inspection, and screamed at me that he’s a nurse and I’m just a parent and I don’t know anything. I had to hover over Leah the entire night to suction her mouth and clear the huge spitballs that were produced whenever the suction tube malfunctioned. The issue only got resolved after shift change, when I convinced the new nurse to just humor me and check the tube. Suffice it to say, it was severely clogged and had not been doing its job for several hours.

Lessons to take away from these two experiences:

Medical professionals can help by putting themselves in parents’ shoes, whether it’s a parent who is new to hospital life or a parent who has been dealing with their child’s condition for a long time. Those alarms are loud and scary when it’s your child attached to them. They keep ringing in your ears long after they are silenced on the screen and, sometimes, long after you leave the hospital. It would have taken all of 3 minutes for a nurse to explain the sensitivity of the monitors, and let the mom know that they can see all of the child’s vitals on the screen at the desk and they watch for real emergencies vs. sensor errors. The same level of empathy toward parents would have allowed our overnight nurse to act with compassion and offer to demonstrate to us that the tube was working, at which point he would have discovered his error and the problem would have been resolved.

Parents don’t always know what is wrong – but when we truly feel like something is off, we are usually right, even if we don’t know exactly what the problem is. We don’t have to be right all the time. We do have to feel like we have been heard. And we know our kids. In our case, we had been observing the peculiarities of Leah’s anatomy and secretions for three months already, and we knew what other nurses had tried in terms of flushing the tube. We knew the signs of obstruction. I watched Leah struggle to breathe all night knowing full well what the problem was, and was made to feel completely helpless over it.

The best doctors and nurses we have seen have said to us, “I’m the doctor/nurse but you’re the expert on your child, so you tell me your concerns and let’s talk about them.” The worst ones, and the ones most likely to miss something important, have said, more or less, “I’m the doctor/nurse, I’m the one with the degree, you’re just the parent, so you listen to me.” And that never ends well.