3 Ways to Advocate for Your Child at Medical Appointments

Doctors are amazing. But sometimes we need to advocate for our children.

A mere twenty-four hours had passed since we brought our fragile baby girl home from the neonatal intensive care unit. I felt like I was gearing up for battle as I walked into the pediatrician’s office.

“It seems like Bethany Grace isn’t tolerating the tube feedings. We see milk in her throat afterwards that causes her to choke and lose her color.”

“That’s impossible. She’s had the Nissen Fundoplication surgery.”

He’s not listening. Take a deep breath, Kristin.

“But she has trouble breathing, and she cries in pain.”

“Well, she seems like she’s breathing fine right now.”

He actually doesn’t believe me. What are we going to do?

When my son began experiencing serious medical complications at only four-months-old, I learned very quickly that there’s a fine line a parent must walk between blindly following a physician’s orders, asking questions, being assertive, and flat-out refusing to comply. When Bethany Grace was born, this tension went into overdrive. It can be difficult to know how to effectively advocate for our children and at the same time build collaborative relationships with their doctors.

Over the past fifteen years, I’ve learned these three ways that we, as disability or medical parents, can effectively advocate for our children at medical appointments.

1. Come Prepared

• Keep logs at home of medical events, your child’s feedings, vomiting, other symptoms, and record what you did to intervene. Record concerning events that might warrant physical, speech, feeding, occupational, or mental health therapies. Documentation might make the difference for the doctor being able to run a test, prescribe a treatment, refer you to a specialist, or order interventions.
• Know your child’s condition (s). Research on professional sites like the Mayo Clinic, National Institute of Health, Rare Diseases.org, well-known children’s hospitals, etc., not just any site on the internet. This is not so we can go into the appointment holding this research or citing it. Rather, having this knowledge helps us know what questions to ask. It’s important to simply understand the factors and best treatments, not to tell the doctor that we’ve researched or that we believe we know what our child needs.

• Make a list of concerns, questions, and goals for the appointment

• Bring anything that will keep your child calm so you can focus on talking with the doctor (tablet, a new sensory toy, a snack, a reward if they stay calm, etc.)
• Take someone else with you to the appointment—your child’s other parent, a family member, or friend. They can help you write things down, stick to your goals, or take your child for a walk in the hallway

2. Balance Politeness and Respect with Being Assertive

For me, this has always been the most difficult skill to apply. And for good reasons—it’s our child! We care more about their wellbeing than any other person in the world. We walk into the appointment with emotions, exhaustion, concerns, and even fear. Fear can be a big one. What if the doctor doesn’t listen or agree there’s a problem? What if they don’t take me seriously? What if they can’t figure out what’s wrong? What if they just want to “wait and see?”

We know our child better than anyone else. But we may not be medical professionals, especially a specialist in that particular area. That’s why this collaborative relationship with our children’s providers is critical.

We’re on the same team.

They went into this field because they care about their patients and want to help them. It’s important that we go into the appointment with an open, teachable, and graceful attitude. In most cases, their medical opinion is right on.

However, sometimes we can believe that their opinion is wrong. With all the hundreds of appointments and hospital stays, I can count only on one hand the number of times I felt like a doctor wasn’t interested in my viewpoint, concerns, or questions. These were the times that I really had to be assertive.

For example, several years ago we were on family vacation enjoying a beach day. Josiah was playing happily in the sand. The next thing we knew, he was lying on the ground not moving and crying in pain. Textbook. Call it mother’s intuition or just basic medical knowledge, I knew instantly that he was having an appendicitis

With his metabolic disorder, something like this could cause his body to spiral. By the time we arrived in the ER, he had a high fever, was screaming in pain, and vomiting. The doctor insisted that it was just a stomach virus. Here’s how the conversation went:

“Alright. I’m discharging you to go back to your hotel. You can come back if he worsens.”

I knew the research from when Todd had his emergency appendectomy. A high percentage of patients are sent home only to return in more serious condition.

“Have you ruled out something more serious like an appendicitis?”

“Well, the only way that we can do that is with a CT scan. You don’t really want to radiate your son for no reason, do you?”

“We’re not leaving here until he has the CT Scan.”

As soon as the radiologist began to look at the images she yelled for the doctor.

He came back in. “I’m sorry. I thought you were just an overreactive mom and that your son was being dramatic. I’m ordering morphine, and we need to remove his appendix before it ruptures.”

This is an extreme example, but it does happen.

These are some phrases that can communicate respect and curiosity at the same time:

• Would you recommend ___ ?
• We have two questions…
• What are ALL of the risks and possible side effects of this treatment?
• How will this treatment benefit my child?
• We don’t really feel comfortable with this plan at this moment.
• Can you explain this more?
• Is there a less-invasive approach that we can try first?
• Thank you for your time.

On the flipside, these phrases tend to shut down the conversation and alienate us from the doctor:

• Research shows…
• I think we need to…
• I think you’re wrong.
• We’re not doing that.

Above all else, it’s important that we avoid arguing. This will get us nowhere. And refusing to comply with the doctor’s orders can actually result in the doctor discharging our child from their care. It’s a really tough balance.

3. Listen to Your Gut

Know your rights and options. If you feel that your child’s not receiving the care they need, then go for a second opinion if possible. Over the last almost sixteen years, there have only been two doctors that we’ve had to remove from our son’s care. The first way we did this was by driving four hours to another hospital. The second time, we went to the hospital administration and requested a new team. Both times taking these drastic steps saved his life.

It can be very tricky to know what to do or say. When you feel like maybe you should have done or said something else, give yourself grace. You made the best decision based on the information that you had at the time. Read more about extending yourself grace with your child’s medical needs.

Sometimes we do just have to wait and see and follow up. And that’s the best course of action.

But if you leave an appointment feeling like your child needs more immediate intervention, go to the ER to be reassured that they are okay or validated that something more serious might really be going on. Go to a different hospital ER if you feel like you will get a more objective second opinion.

When Josiah was little another medical momma said to me, “Listen to your mother’s gut.”

How do you effectively advocate for your child at medical appointments?

Make sure to leave your advice in the comments section below.

Blessings,

Kristin

Kristin Faith Evans, MA, MS, LMSW

Kristin is an author, a speaker, a mental health therapist, and a special needs mom. Her greatest passion is walking with others on their journey to deeper faith and mental health wholeness. As a Licensed Masters Social Worker and with her Masters in Christian Spiritual Formation, she has served in youth, camping, and retreat ministries and is experienced in Christian counseling, couples and family therapy, substance abuse treatment, and crisis counseling. Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. When she is not enjoying life with her family, writing or working with clients, you can find Kristin training for triathlons, reading, or simply being out in nature. Visit her author website at www.KristinFaithEvans.com.