Since 2015, Jess has fought for her special needs child's wellbeing and health through noninvasive approaches.
Something I hate more than anything since becoming a medical parent is seeing others feel hopeless. In Fall 2015, I gave birth to my daughter Aubby, who came into my world with a terminal diagnosis of Trisomy 18 (Edward Syndrome, the second most prevalent trisomy after Down Syndrome), and from that experience I grew into medical parenthood. I’ve had to learn to confidently speak up for myself and my child’s needs, and learn to trust my own judgment on medical care in the face of doctors who believe Trisomy 18 is futile for putting forth effort. Most chromosomally challenged kids like mine perish prenatally or largely under age one year, but I’ve grown my girl past age five. Knowing how to self-advocate is an important part of how I do it.
It was during the latter half of when my daughter was in neonatal intensive care (NICU) that a nurse told me that if I wanted to do better, then I needed to grow a backbone and speak up when the doctors insisted on telling me my child wasn’t worth time and energy to care for. But that nurse’s words stayed with me: “However much you fight for it, is the quality of care your daughter will receive.” So I took her advice and pushed back.
And I’ll say, pushing back against standardized medical care is one of the hardest things that a patient or caretaker can do. It requires open-mindedness for learning about the medical condition needing protected. It takes guts to look a licensed medical professional in the eye and ask them how they reached their conclusion. It’s almost insanity to challenge some medical care when it really doesn’t make sense and should be re-evaluated.
So I’ll say, advocating good medical care takes courage. It grows the lion in our souls and gives us voice to roar.
Tips For Self-advocacy
Prepare for appointments. I bring a running list of medications and/or supplements using, notes of symptoms patterns/highlights, any studies that I feel support my opinions/concerns, and any questions I’ve had.
Keep informed. I keep up on my daughter’s health progress by researching symptoms and how they each relate to the next. Informing myself on health patterns gives me information so I can guide appointments in a productive manner that actually answers health concerns without dismissing them out of hand due to a chromosomal diagnosis.
Maintain a health binder. I keep a binder with original clinical notes for each specialty, the most recent update(s), and specific records of note such as microarray, immunizations had, and allergy paperwork. That’s my travel binder for appointments. At home, I keep a complete health record printed out following appointments. Clinical notes for each specialty are sleeved in specialty-specific binders. Obviously, having a printer at home gets kind of important.
Ask questions. If I don’t know something, if I feel uneasy about anything, if something has happened two or more times and isn’t being examined, or if the information presented to me does not follow logical reasoning, I start asking questions.
Make sure I understand. I make sure I understand what I’m being told by ask-tell-ask, and pausing any activities until I am clear on the process. In ask-tell-ask, I ask a question, the specialist tells me the answer, and then I reframe the answer back to them to make sure I heard them correctly, which might sound like, “So, you’re telling me that [problem] means [conclusion]?”
Don’t wait, initiate. There was a time when my daughter was becoming unresponsive in her hospital room while waiting on an ultrasound for what turned out to be intussusception (that’s “telescoping” bowel, like a sleeve turning inside out). It was a weekend, so the nurse kept telling me we had to wait on “transport”. Half an hour later, and far more worried, I finally asked what “transport” meant… It turned out, the nurse was waiting on a wheelchair to move my daughter. At that time, my daughter was a 25-pound toddler. When I heard we were waiting on a wheelchair, I told the nurse to get up, picked up my daughter, and then I told the nurse, “We’re going to ultrasound right now. She is not that heavy. And there’s no reason this should have waited.” I did not wait for that nurse. I walked out and told her to lead me where we needed to be and to make sure the tech was there. And I was absolutely right, because intussusception can be fatal if not treated promptly. I have had to not be afraid to request better help by seeking supervisors… or in cases like that, calmly but firmly doing it myself.
If the doctor isn’t listening to my concern, I request they put that in my health record. There have been times when doctors have tried to ignore symptoms and other information. Requesting they record their choice not to follow-through in the health record makes them accountable for potential neglect. Nobody wants to be accountable later if something goes wrong when information already provided could have resolved an issue sooner.
Know your need and request a Patient Advocate. If staff are belligerent, bullying, or not listening, demand a Patient Advocate. Tell the Patient Advocate that [what you need] needs done to [this standard].
Sometimes team members need to meet. When two week-long planned admissions didn’t see a doctor at any time, I demanded a team meeting immediately. I told the nurse, “Get it done, or I’ll make sure it does.” It turned out that the surgeons I was waiting on in the first place told me they “never intended” to intervene. I was able to demand answers of the entire room why it was that my child was admitted when they never intended to do anything. Spoiler, there were no satisfactory answers.
File complaints when they need to be filed. I never did make formal complaints, ever. I was too exhausted. But my advice to my old self would be to make the effort. Not complaining about substandard care leads to more mistakes in my life, and for others receiving that same type of care. This means taking names of providers as you meet them, and submitting those names. Those providers are in charge of your health, and they are responsible for taking that seriously.
Change providers. Providers may be individual staff, various nurse staff, or even the clinic or hospital entire. It is MY responsibility to be sure my child is getting the level of care she deserves by staff who believe in her. I personally follow a “two strikes” rule unless the issue was especially egregious – how people are treated should be believed the first time.
Leave all appointments with a plan. The plan doesn’t need to be fully realized, but next steps should always be discussed in order to smooth the follow-up process.
Discuss when and how to follow-up. A close cousin of having plans, knowing when and how to follow-up on plans helps clarify my worries, keeps progress moving, prompt, and cohesive. This discussion also makes it clearer when referrals are needed.
Read clinical notes after appointments. My rude reminder to do this was when I found out my daughter had a benign mass of some kind on her liver… But I found out 18 months after it was mentioned in an earlier report because it wasn’t the primary concern at the previous scan. Had I stayed diligent, then I would have seen that mentioned and could have asked about it.
Always confirm referrals, procedures during appointments, and that appointments have been made if they need it. Doctors are busy. So am I, but if I don’t do these things then the person who gets hurt is my daughter. Two examples of this include when she was a “hard stick” and I learned to request IV Team, and when a microarray was improperly drawn (in this case it was my son) and had to be re-drawn due to the wrong vial tops being used. When my daughter gets hurt because I did not follow-through, then I get hurt. Better safe and diligent, than sorry later.
My family's health is MY family's health. Just because someone says I need to do something, doesn’t mean I must do it if it’s not right for me. In my daughter’s case, a dietician insisted she should be put on a prepared feeding tube blend she had already reacted to previously with worse reflux. I had to say no, and work even harder to determine usable ingredients.
When all else fails… I don’t ask permission to take care of myself. I state quite plainly why I’m taking control of the information I have, and that if the provider wants to do better then they need to do so. Or if I have research that supports my point, then I do that at home “low and slow” so I don’t overreach and stay safe. One example of this was when my one-year-old was already having rods discussed for scoliosis by a pediatric developmental clinic, but taking her to a chiropractor resolved it in three weeks. I seek noninvasive approaches before I seek large procedures.
I guess a lot of how I self-advocate is based in how organized I must be. And my standard for that is to be as organized and knowledgeable as my providers, or improve on it if that standard is lacking. I’ve also had a lot of pushback in simply caring for my child as a person and not a diagnosis.
Something to remember is that all people are afraid, and all people can be brave. The key is that I had to stop fearing what others will think if I asked a question. What they think doesn’t matter if it’s not helpful.
How’s it said? An ounce of prevention is better than a pound of cure.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2021 Jess Plummer
Jess Plummer (author) from Nashville Area, TN on August 05, 2021:
Thank you so much!
ClaraK on August 05, 2021:
Great article. You are an amazing Momma!