By Guest Blogger Marilyn Beaver
Embarking on the journey of parenthood is filled with joy and hope. But for some parents, it takes an unexpected turn when they find themselves caring for a medically complex child. These children face ongoing health challenges, requiring specialized care and advocacy beyond conventional parenting.
My own journey began five years ago with my first pregnancy. Although there was incredible excitement, we had enough scans and tests along the way to know that, by the time my due date approached in December 2018, we were heading solidly down a medically complex path requiring increased healthcare needs.
Advocating for my daughter has brought a mix of emotions, and navigating the intricacies of the healthcare system can be overwhelming. To help others on a similar path, I share the foundational steps I’ve used to be prepared and advocate for my medically complex child.
Understanding Your Child’s Medical Conditions
This may sound basic but stay with me here. Advocacy starts with knowledge. Some of that knowledge comes from your child’s doctors and clinical specialists. But valuable information can be gathered from other resources outside of your medical team.
Does your child’s diagnosis include an association where you can access specific clinical research? Until our daughter’s official diagnosis shortly before her third birthday, we were only managing physical conditions – feeding problems requiring a gtube placement; open heart surgery to close a hole in her heart. But we had no answers as to why she was experiencing these issues. When our final round of genetic testing showed Noonan Syndrome, it all made sense. Children present with this condition overwhelmingly suffer from feeding difficulties, heart defects, and neuromuscular delays that affect overall body systems.
Find parent groups where you can ask about others’ experiences. I belong to several Facebook groups where parents ask for suggestions on doctors, procedures, medicines, supply shortages, schools, clinical trials – if you have a question about it, someone has an answer. Or sometimes it’s just a great place to vent. I’ve met the most kind, thoughtful, compassionate people by connecting with other Noonan and medically complex families.
This knowledge is power. It gave us the tools to shape our conversations with medical providers, therapists, and soon enough, school intervention specialists. It framed our vision for the future and how we could get there. Understanding the intricacies of your child’s medical condition(s) is not only empowering for you as a parent but also pivotal in ensuring the best possible care for your child.
Track, Track, Track Your Data (and Insist that Your Medical Team Review It)
Write everything down. I have an entire storage box of notebooks in my basement filled with feeding times and volumes, caregiver schedules, symptoms, changes in routine. It’s an odd sort of memory box that can spark sadness at times. But flipping through those pages also elicits a sense of pride when I can see that my husband and I are our daughter’s fiercest advocates who will always act in her best interests.
Those notebooks have come to doctors’ appointments, hospital admissions, therapists’ offices, you name it. By not only tracking this data but also using it to guide conversations with my daughter’s providers, we’ve been able to make informed decisions on how to manage her care.
Communicate and Collaborate with (but Challenge) Your Medical Team
Effective communication with healthcare professionals is a cornerstone of providing quality care for a medically complex child. Establishing open communication channels with doctors, nurses, and specialists fosters a collaborative environment that contributes significantly to the overall well-being of your child.
How do you do this? A few suggestions:
- Connect with your child’s providers on MyChart or their version of a patient portal.
- Use your time at in person appointments to make sure you have the name of your doctor’s nurse on call, their contact information, and preferred contact method. Some of my doctors are quicker to respond via MyChart message, others prefer an email, while some are easier to nab through their nurse.
- Are there any other caregivers who will be attending appointments or need access to information? When our daughter was first born, there were too many appointments to keep anyone’s head above water. We had the support of grandparents, but privacy laws require that you complete paperwork granting them access to appointments and health information if you are not present. If your support system includes a team of family or friends who will be attending appointments, make sure you ask for the necessary paperwork at every office.
- Keep a list of all your child’s specialists, their contact information, and the frequency with which you see them (as needed, monthly, 6 months, annually). This saves a TON of time if you’re ever filling out forms that require medical information and background.
- Not feeling like you’re being heard? The best doctors are those who listen to you, who value your experience as a parent and your knowledge of what works (and doesn’t) for your child, and who incorporate this into their care standards. If you’re ever questioning a diagnosis or treatment plan, ask for a second opinion. If you find that this is a pattern, there is always an option to switch providers. Is it easy? No. Worth it? Yes.
Build Your Village
Our journey as moms of medically complex children is full of unique and demanding circumstances. It’s easy to feel alone, even when you’re surrounded by people who want nothing more than to provide love and support. In the early days, I often felt like nobody could give true support because they couldn’t really understand what we were going through. But now I realize that finding comfort, help, and assistance through many different channels is the best way to keep myself in a physical, emotional, and mental state that allows me to advocate best for my daughter.
Don’t be afraid (or forget) to take care of yourself. If someone offers to help, accept it, even if you don’t think you need it. It will do wonders for your mental load. Feeling stuck? Need to build your village, but don’t know how? Please reach out to me – I love connecting with other families to share resources, vent, or just say a friendly hello.
As you continue advocating for your medically complex child, just remember one thing:
You’re rocking it.
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