When our daughter was a few months old we knew something was wrong. In addition to missing developmental milestones, she refused to nurse and she started losing weight. These babies are the same age. Avery is the one in pink, obviously. She was so tiny in comparison.
|This picture makes me sad. But it also makes me laugh. Hello, Andrew on the right?|
Breastfeeding was a struggle from day one. Poor suck, tongue tie, high palette, persistent thrush—these were the reasons given at the breastfeeding clinic. We switched to bottle feeding hoping it would help. It didn’t. Our baby was fading away and we begged doctors for help.
Our family doctor who was on our side from the beginning sent us to see a well-respected pediatrician. Without even taking Avery out of her baby carrier to examine her, he dismissed my concerns as dramatic postpartum nonsense and shooed me away.
As an aside… three years later we met again in a hospital emergency room. He was the pediatric doctor on call the night Avery had her second life threatening seizure. I reminded him of what he had said and what we had been through. I was shocked by his humble and apologetic reaction. Hearing him admit his mistake helped me inch closer to letting go of the resentment I felt toward him.
After he sent me away in tears, we were referred to another highly recommended pediatrician. It’s been years now since I last thought about her. I was shocked to see her mentioned in the comments under this Facebook post last night.
This family’s doctor made a mistake and they have every right to seek out a new doctor. Of the 24 comments on her post, half were singing the praises of a particular doctor. Glowing recommendations like; “She’s fabulous, amazing, I love her, she saved my son’s life…”
This doctor sounds like a dream come true. Though, if we had followed her advice, our child certainly would have died.
This new doctor seemed kind and knowledgeable and I felt relieved. I shared my daughter’s history and explained our concerns, adding that on top of everything else her urine had developed a foul odour.
She told me not to relax (ever notice how being told to “relax” has pretty much the opposite effect?). She sent me to the hospital to pick up a urine collection bag. I asked how I was supposed to collect urine from an infant who is severely dehydrated. She told me it would be fine. Fine—a four letter f-word for “Stop being a hysterical mother and just do it.”
So I dragged my sick baby to a germ infested hospital to pick up the urine sample bag. I took it home and struggled to collect a pathetic amount of pee. I hoped it was enough and drove it back to the hospital to drop it off for testing.
Two days later Avery took a turn for the worst. She was listless and grey. We returned to see the doctor after I begged the receptionist to fit us in. She was clearly annoyed by my tears.
When we saw the doctor the urine results hadn’t come back yet. I wasn’t worried about that. We had much more serious concerns. We were watching our daughter starve.
She suggested giving our seven month old baby who was refusing all food and liquids, cheesecake and cream brulee. This was her medical advice. That wisdom, and “Let’s just wait and see.”
Wait and see?
Wait and see how long it will take for her to actually starve to death? Wait and see how long it will be before her kidneys shut down from dehydration? What for what exactly?
I drove straight home from her office, packed an overnight bag, and called my husband to tell him to meet us downtown at the Sick Kids Hospital emergency department.
Avery was admitted. The doctor who examined her asked where we’d been. He said, “This is a very sick child. You should have been here ages ago.”
We were later transferred to a hospital closer to home. This is where we learned about the chromosome deletion disorder. And this is where everything we had been through started to make sense.
When I phoned home from the hospital for messages there was a curt voicemail from that nasty receptionist. We had missed our follow up appointment and would be charged. She added, “The doctor needs to see you. Your daughter has a severe urinary tract infection. Call us immediately.”
Oh, I called back. From the hospital where we would end up living for over a month. I tried to tell the receptionist how upset we were. But I mostly just sobbed and couldn’t get my message across the way I wanted to.
We learned how to use a feeding tube to keep Avery fed and hydrated. We started teaching her to sign, and took her for physical therapy. We also found a new pediatrician who we learned to trust. We were so busy working to help our girl thrive that I never followed up with that doctor to tell her how miserably she failed us. I deleted her from my brain.
And then I saw her name in those Facebook comments last night and it all came rushing back.
I didn’t comment on the post. My immediate instinct was to share our story with the group to warn them to stay clear of that doctor.
But this was our experience with this doctor. Clearly others think she’s great. So I didn’t comment.
Even the best doctors make mistakes—they misdiagnose symptoms, they prescribe the wrong dose of meds, they tell patients to wait it out. It can happen, even when your doctor has the best intentions.
The bottom line is we need to be vigilant—do the research (even if it’s scary), ask the questions, question everything, know that the doctor’s word isn’t final, seek a second or third opinion, be the squeaky wheel, follow your gut, and remember that even the best doctors make mistakes.