How to be a Fierce Medical Advocate for Your Child
Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first. When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU - when Adeline was constantly getting sick, with regularity, every 10 days. She’d start to have feeding intolerance, her belly would blow up, and she’d start excessively vomiting. The doctors would say that she had a C-Papp belly, or that she was just a "happy spitter". I heard their words, but I knew something wasn’t right. Each time it occurred, the treatment was the same. NPO and gut rest until she baselined. But when we reintroduced feeds, the cycle would repeat. It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing. I needed to voice my concerns. I was with her all day long and there was nothing "happy" about her spitting. It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!
You need to learn everything about your child’s diagnosis, their strengths, their specific needs, and the challenges they currently face or that they will face. Make sure to read reputable sources and not trust every available source. It’s also important to keep learning; the medical world is constantly changing and evolving and you must be prepared to move at its pace.
Research treatment options, procedures, doctors, and hospitals. Figure out the best people and places for your child’s specific needs. A doctor who may have been a perfect fit for another child may not be a perfect fit for yours. Don’t rest on your laurels, either. While you may find a team or an institution that seems to fit at first, don’t take for granted that they’re the only or best available.
It’s important to gain other perspectives on the issue, diagnosis, and treatment plan. I often have the same conversation with many providers so I can get varying opinions from the different team members; surgery, GI, nutrition, NP, etc. Don’t be afraid to break down the ego barriers that exist in many medical establishments – and recognize that no single person has all the answers.
Ask the “What’s Next?” Questions
“If this test is negative, then what does it mean? What will we do next?” or “If this test is positive, what is the treatment?” I’ve had experiences with providers saying not to get ahead of myself and to wait, but it can help you to better prepare yourself if you know what could possibly be next.
Don’t Assume and Don’t Wait
Don’t assume everyone will make the best decision for your child’s rare disease and don’t wait for someone to recognize what you need or expect others to advocate for you. Doctors and medical providers are human, they make mistakes, they don’t know everything, and you are the only constant in your child’s life. You need to take control of your child’s medical treatment and be their voice.
Your time with doctors during an appointment and rounds in the hospital is limited, so always be ready and prepared. Have questions prepared, and if possible send them in advance. While in-patient, no matter how tired I am, I make sure I’m awake and have had my coffee before the doctors come around in the morning, usually before rounds. This gives me some extra one-on-one time with them. And if you can, always participate in rounds. It’s one of the only times in a hospital stay that you’ll get the entire team together at once.
Ask Questions, Voice Concerns
I try to ask questions during every conversation I have with a member with Adeline’s medical team. I ask the same questions to multiple people. I also always voice my concerns about every step of the process and share with the team my priorities for her. Sometimes, the questions may be to check my own comprehension, “What I am hearing you say is that this is the current plan and these are the reasons we decided on this plan, did I miss anything?”
Prioritize Quality of Life
One thing your team may not always be thinking about is your child’s quality of life. Have they gotten enough sleep? How can you normalize their day as much as possible? How can you make sure they’re as comfortable as possible? Doctors and medical professionals have a tendency to focus on the specific, acute problem at-hand, sometimes losing sight of the bigger picture that is your child’s life. During our most recent in-patient stay, they weighed Adeline at 7pm, did vitals at 8pm, medications at 8:30 pm, and hung her PN at 10pm. This was not convenient for a toddler and interfered with her bedtime, so I spoke to the team about clustering her cares and doing as much as possible all at the same time. It was a small thing, but when she’s dealing with other things, interrupted sleep doesn’t need to be an add-on.
Maintain Your Own Records
It’s essential to maintain your own records (to a point). Make sure to have a list of all your child’s medications (not just the dosage, the strength), recipes for formula or in our case, her TPN. If your child has a medical device, know the size, brand, and carry a repair kit or any specific, hard-to-get supplies as every hospital may not carry what you need. In my diaper bag, I carry an emergency medical kit with all the items she might need. For example, during our last in-patient stay the floor did not have the right GJ tube connectors she needed, so my extra set came in handy!
It’s important that you fully understand your current health insurance plan. It can help you make decisions about which doctors to use, and what therapies your child needs. For example, we had a cap on how many OT, SLP, and PT sessions we could have in a year. I knew we couldn’t have every therapy every week or it would cost us 1000’s per month so we had to prioritize what she needed most, and how much of each type of therapy she would need. It’s also you important you review medical bills, as up to 8/10 medical bills can have errors. Sometimes, these errors can lead to denial of care and if caught, you can often appeal their decision.
Having partners goes a long way, so making the extra effort to befriend nurses, secretaries, and your medical team will only benefit you and your child in the long-run. Be willing to compromise, but only when it doesn’t impact your child’s safety, health, and overall well-being. When teams disagree, ask for a parent meeting with everyone present. Whenever possible, take advantage of any patient liaison/advocate services offered by your providers’ institution(s).
Handle Disagreements, Like a Boss
Say what’s on your mind, but try to do it in a way that doesn’t place blame or hurt anyone else. Try to control your emotions and avoid getting angry or defensive. Be brave enough to say, I don’t agree with you. Don’t give up because of red tape, typical protocols, or recent defeats. The journey of a complex medical kiddo is often uphill, and the only way to succeed is to push on.
Know When It's Time
You need to know when it’s time for a second opinion, even if it’s just to give you peace of mind. Also know when it’s time to move on to a new doctor or hospital. As I said before, medicine is ever-changing and constantly evolving. Find a place that evolves at or above the going rate. If you feel them dragging their feet or heading in the wrong direction, course correction doesn’t always work. Sometimes, you’ve got to find a new team that’s willing to try something new, something better, something that will move your child forward.
You’re going to lose your sh@t sometimes, let your temper get the best of you, make mistakes, feel guilty, and have regret. Accept responsibility, learn from it, and forgive yourself quickly, because there is someone who needs the best version of you. That best version isn’t the person feeling sorry for themselves or wallowing in their own self-pity.
Do you have more ideas on how to be a fierce medical advocate??
Comment below and i will update the post!