Last month I had the honor of sharing a parent's perspective at the "Pediatric Epilepsy Conference 2021: Improving Healthcare Outcomes in Childhood Epilepsy" presented by Washington University in St. Louis, MO and St. Louis Children's Hospital. As a mom of a child who had intractable epilepsy, this conference on improving healthcare outcomes for childhood epilepsy is a topic that is very near and dear to my heart.
Like most medically complex children, my daughter June's story is long, complicated, confusing, and impossible to describe briefly. You can read my full remarks here, which give more background on June's health. While no two experiences are the same, I know firsthand what it is like to care for a child with this devastating condition and other medical complexities. I also have some ideas on what could have improved our journey. Below are five important insights on how healthcare providers can best support parents and families of children with medically complex, neurological conditions.
1.) Introduce palliative care to families with children with severe epilepsy and medical complexities like June had early on. Hindsight is 20/20, but looking back, this is what I wish would have happened after June failed her last viable treatment with infantile spasms in July 2013. June's palliative care doctor was a great support to us. Our appointments focused on June's comfort and everyone's quality of life. I used to be afraid to ask about June dying to other doctors because I thought they would think I wanted her to die. No one was bringing it up, so I thought they might look at me suspiciously if I did. With our palliative care doctor, we could ask questions freely and openly. She was our lifeline, and I am so grateful to her.
June passed away in my arms, surrounded by her dad and baby brother. I can't imagine a more peaceful way to die. And we got that experience because of palliative care. June's palliative care doctor educated us on the dying process and what to expect as that time came closer. This education was critical because my husband and I hadn't experienced chronic illness or death until it was happening to our first baby.
2.) My second suggestion is to be clear and concise in your communication. I think I was confused about June's healthcare outcomes because the doctors we met with were not clear with me about her future and that June would likely die young. June's was a unique scenario, and I appreciate that there was no way to tell how her condition would unfold without a diagnosis. We asked questions about what to expect for June's life, and most of what we heard was, "it's unlikely," "we don't know," "it's hard to tell." No one ever misled us, but we were confused because no one was "telling it like it is" in simple terms. I say simple terms not because we are dumb or stupid but because many of us are flooded with so many emotions in your office that we can't take in what you are saying even as we hear the words coming out of our doctors' mouths. It all sounds like the teacher in Charlie Brown. Through the vague communication and uncertainty from the many physicians June saw, I filled in the blanks with a very hopeful outcome. Don't get me wrong, hope is so important but it is also critical to straightforwardly acknowledge what will likely happen.
3.) Our families face a lack of continuity of care, at least from a caregiver standpoint. I know June's doctors communicated to one another in their notes, but to us, each specialty felt separate from the other, and it seemed the care of June as a whole person was lacking. I know the child's pediatrician is supposed to be this person, but that is not how it truly is. Pediatricians are so busy with typical or less complex children that they cannot provide the level of coordination a child like June requires. I would also like to add that the amount of times families like ours have to retell every detail of our child's health journey is exhausting. It seemed we were repeating ourselves at each doctor's visit and various times during a hospital stay. Recounting this information can be traumatizing, and I wish there were a way where families didn't have to repeat it all the time.
4.) The fourth issue I want to address is caregiver burnout. We are tired - emotionally, physically, and completely drained. As you know, medically complex parents and those with severe epilepsy play many roles to their children besides mom or dad. Many of us are not technically qualified for the jobs, but we have learned the skills. The only difference is there is no break. It is 24/7, 365 days a year, with no end in sight because there are very few respite resources. Additionally, insurance does not cover respite, and when you can get a Medicaid waiver to pay for nursing care, you have a whole staffing issue to wade through. Earlier this year, I read articles about parental burnout and the impact of the pandemic on mothers. Amidst the reports, I kept thinking this isn't new for medically complex parents, particularly mothers; this is normal, daily life. It felt like the rest of the world was getting a taste of what it felt like to be us. And I hope with that knowledge we can work to find some real solutions.
5.) The final insight I want to share with you is that finding a community of support is crucial in caregiver well being! Early in June's health journey, I felt incredibly isolated and was craving connection from someone who knew and truly understood what I was going through. June was often the most severe case in the support groups I had heard about, which only magnified how bad we had it. Thankfully, I found other moms through word of mouth, and we connected. A few of us started to get together about once a month for dinner. I felt seen and supported during these get-togethers - we vented, shared resources, and we laughed! We had fun. It was a club none of us wanted to be a part of, but all of us were grateful for the others. I found these relationships critical to my mental health as a caregiver and allowed me to find greater acceptance, meaning, and joy.
When June died, my husband and I started the June Jessee Memorial Foundation in her honor. We had one simple goal in mind: to help make lives easier for parents of children with medically complex, neurological conditions. Our Foundation provides financial grants to help pay for many essential items not covered or only partially covered by insurance. We also provide free mental health services for caregivers by funding the behavioral health position on the neurology floor at St. Louis Children's Hospital. Therapy was helpful to me as June's mom, and I want to make sure all parents have access to that.
Additionally, we offer several ways for families to find connections to relieve and recharge themselves. Pre-Covid, we hosted quarterly Mom's Night events, but we've pivoted to providing virtual events once a month. We offer free monthly music therapy with a therapist who specializes in music therapy for children with neurological disorders and free trauma-informed yoga for caregivers once a month. Our virtual "Coffee Talks" with a professional mental health specialist have been popular too, and it's been awesome to see people joining from all over the country to connect with our community. We even had someone Zoom in from England! It's been exciting to see the relationships that have formed from our efforts and to see fellow moms and families laughing and enjoying their time together. I knew community was important from my personal experience, but seeing it through others' eyes has made me understand how critical it is...and the wellness and happiness it can bring.
Our journey with June has enriched my life. She brought amazing people into our lives, and she taught me many life lessons I will carry with me forever. The most beautiful part of our journey, though, was simply being June's mom. It is probably the most rewarding experience of my life. Despite everything she dealt with, June was strong, incredibly sweet and loving, and her frequent smiles and laugh were magical. Holding her in my arms is an experience I will never forget, and I miss her every day. I hope these insights can help make the road easier for others. June wasn’t the first and unfortunately she won’t be the last. We may not cure our children yet, but we can make their time here with us more manageable and even enjoyable for all involved.
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