When my son was diagnosed with Down syndrome 12 years ago, our family was thrust into a world of medical specialists that was foreign to us.
I still vividly recall this harrowing experience with a cardiologist.
Aaron was a month old, and we’d been sent to our children’s hospital to make sure he didn’t have a hole in his heart. After the testing, my husband and I sat nervously in the clinic with our wee baby, terrified that he might need open-hurt surgery.
A well-dressed doctor burst into the room. I knew who she was, as we’d been told she was a "prestigious physician." But she didn’t introduce herself. She didn't say a word.
Instead, she proceeded to examine our little boy brusquely, placing a cold stethoscope on Aaron’s chest, which caused him to startle. I didn’t know I could speak up, so we sat there, passively, in silence.
“The ECG and echo showed that he has an ASD, but I hear no murmur,” she said. I dutifully wrote this down in my little book. I didn’t know what an ASD was, but there was no pause to ask questions. I felt so small.
“Book him back in a year for follow-up diagnostics,” she said. Then she turned her back to us and started dictating Aaron’s report into her phone. My husband and I looked at each other. We guessed this was a sign that our appointment was over.
“Are we done?” my husband asked. She stopped her dictation but didn’t look up. “Yes,” she said.
We packed up our son and left feeling very confused and a bit stupid.
I realize now that I should have spoken up to this doctor, who is actually just a person. I could have introduced myself and asked her to warm up her stethoscope. I could have politely interjected and asked my questions. There are so many things that I’ve learned since then.
Here are some tips Isabel and I put together to help you find your voice and get what you need out of your child’s health appointments.
Bring support if possible
There’s nothing worse than going it alone, especially to a new specialist. It can be difficult as a parent to listen to, process and remember all of the information. Consider bringing a family member or friend to help hear the things you miss.
If you’re on your own, bring a notebook and pen so you can write down important information. Because these appointments can be stressful, arrange to call a family member or friend after the appointment to debrief and hear some encouraging words.
Get to know your health providers
Build relationships in the health system. Instead of being intimidated by specialists, think of them as fellow human beings. We chat with receptionists about the weather and find out their names. Ask your child’s pediatrician where they’re going for holidays. Be friendly with all staff, and always take the time to say thank you for a job well done. We hope that if we see the staff as human, they will see us as humans too, not just as “special-needs parents.”
Get your questions answered
You have a right to ask your questions. Come prepared with questions written down in a journal.
Make sure you ask your most pressing question first, rather than leaving it to the end of the session, when there may not be time. Take notes.
It’s okay to ask your doctor to slow down and better explain answers until you fully understand what is being said. Don’t be afraid to ask what an acronym or a medical term means!
Find out how you can be in touch with the doctor if you think of something after the visit. Can you phone? E-mail? Do you need to book a follow-up visit? Ask for a business card or written contact information before you leave.
Know that you’re the expert on your child
We go to health specialists for their clinical expertise and knowledge. But as parents, we are with our kids 24/7, so we, too, bring essential practical information.
If you feel uncomfortable with a situation—with a suggested medication, with a course of treatment, or with a professional's approach—you need to put the brakes on and speak up diplomatically about your concerns.
Sometimes just asking to slow things down so you have some time to think things over is helpful. Sometimes you need to be politely persistent.
It’s important to know that you can always ask for a second opinion or another professional to speak with. You can also ask to speak to someone in the patient relation's office. Some hospitals have family advisories and may be able to connect you with another parent.
Remember the visit is about the child
Prepare your child before the appointment for what to expect, and explain things as they happen on the day. Maintain dignity—by giving a child privacy when he or she has to change or by providing a blanket to cover up. Suggest they be given choices, such as which arm they’d like the blood pressure cuff put on. Model the behaviour you want to see. For example, ask health providers to speak directly to your child with questions. As parents, remember that the appointment is about your child, not you.
We believe that the better we get at speaking up, the better health providers will get at working with our families and providing the kind of care we want and need.
Sue Robins is a mom of three and family advisor at Sunny Hill Health Centre for Children in Vancouver. Isabel Jordan has two children and chairs the Rare Disease Foundation in Vancouver.