Child Neurology Consultants cherish the opportunity to keep in touch with patients and their families even long after their care has ended with us.
Like Juli Henderson.
She is the parent of a very special former patient (her son Robert) of Dr. Karen Keough’s and the founder of an important new online community dedicated to families of medically complex children. (She is also the mother of one of our amazing staff members, Victoria, who works as a research assistant.)
Robert has since passed away due to complications from his mitochondrial disorder, but Dr. Keough and Child Neurology Consultants are privileged to consider Juli a lifelong friend.
Grateful for the care her family received for Robert from our practice, and a number of other support groups, Juli has chosen to give back to other families facing similar serious diagnoses for their children in the most thoughtful way. She has created an online community called “In Our Arms: Life Unexpected” featuring a regular blog and helpful resources to serve as a gathering place for families who are seeking support, encouragement, information, and even a place to grieve in the event of losing a child.
Learn more about Juli’s story and what inspired her to create this special online space in our dialogue with her below:
1. What was Robert’s condition and the various types of treatments you pursued?
Robert had a mitochondrial disorder that involved a variety of body systems including the brain and muscles (causing all types of seizures, poor stamina, muscle weakness, lack of muscle tone), and the nervous system (heat intolerance, excessive sweating). His symptoms became especially severe during ordinary infections, often with ordinary exercise, and with excessive heat or humidity. Later in his life, genetic testing revealed that he also had a gene alteration that predisposed him to seizures and developmental disorders. Robert’s disease was progressive, and he was eventually diagnosed with cerebral palsy, autism, and mental retardation. Attempts to control his hundreds of seizures would, sometimes, mean spending days in the hospital.
Robert’s wonderful medical team, under the direction of pediatric neurologist Dr. Karen Keough, treated Robert for most of his life. His treatments included every avenue possible to lessen his seizures and regression. He was prescribed almost every new epileptic medicine available, many years combining three to five anticonvulsants at a time just to keep him seizure free for a few hours at a time. Robert had a g-tube, corpus callosotomy (brain surgery), VNS (vagal nerve stimulator), and remained on the Ketogenic Diet for several months at a time throughout his lifetime. His language was very sparse, but he found ways to communicate through gestures.
Mitochondrial disease has no apparent therapies because energy cannot be therapeutically applied in a direct way. Robert was treated with vitamin therapy, nutrition support, and developmental/educational stimulation. We worked hard to prevent infections, and monitored him constantly for potential, treatable complications.
His school and all therapies (speech, occupational, physical, behavioral) became a homebound priority. He had skilled nursing care for most of each day, and he required an enclosed Posey bed to keep him safe at night because of his seizure activity. Protective medical helmets were also necessary and helpful, as his drop seizures increased. As a teenager, he became wheelchair bound, but managed to keep one to two iPads working on his wheelchair tray at all times!
Robert passed away at age 18. A few months before he passed, my husband, Robert and I underwent genetic testing. Dr. Keough and Robert’s geneticist, Dr. James Gibson, informed us that Robert’s mitochondrial disease stemmed from a genetic diagnosis of CHD2 epileptic encephalopathy. This detailed diagnosis was based on the testing we did before Robert passed, but was completed only after his death. Prior to this diagnosis, Dr. Keough simply called it “Robert’s disease” because his disease was extremely rare.
We are forever grateful that his doctors recommended that the blood work take place at that time in his life, as it would not have been possible a few months later. This diagnosis was crucial information for our other children who were concerned that such a genetic condition could be passed down through to their families. Thankfully, this is not the case.
During his short life, Robert was most known for his big, toothy smile, and his all-embracing hugs. His capacity to give and receive love was deeply beyond measure.
2. What inspired you to create this blog and online community?
I was inspired by all the families I have encountered that needed constant, current information to help care for their children. These families were willing to listen to other special needs families they knew, or from total strangers. I found that parents, grandparents, and siblings were almost always willing to offer support and suggestions at any point. I know I have been the recipient and the giver of such help. I was inspired to give a “voice” in a safe space for this dialogue to occur.
The blog had been on my heart for several years after Robert passed on February 6, 2015. I wrote the first blog post that summer, but it was too soon for me to write about our journey. I needed time to mourn and let the entirety of his life marinate in my heart. Now, I think that “marinade” has started to slowly make its way into the format of this blog. If families are hungry for a helpful and vital group where they can be transparent and vulnerable, then that is the special community I want to create and be a part of.
3. What advice would you give to other parents coping with serious medical diagnosis or long-term care of a medically complex child?
Well, first…subscribe to and read our blog! (LOL!)
Second – Find a group of people who can understand your unique needs and point you in the right direction for assistance. Any Baby Can (ABC) of San Antonio had that group of professional case managers for our family. They intervened when I first started to need medical equipment for Robert. His assigned caseworker educated me on what would be necessary for us to care for him in our home. I could not have done what was necessary for our son if ABC had not stepped in.
Third – Rely on a few family members or friends who can support you physically and emotionally. It may be your school Special Education PTA group, your church family, your online community (In Our Arms Blog!), your colleagues, or family members. Honestly, I relied on all of these groups over the course of Robert’s life. Even now, I continue to find strength in my church family, my voice students, the ABC Board of Directors, close girlfriends and my incredible family.
Fourth – Pace yourself! I wrote about this in my second blog post. It was the most profound advice given to me. We do not always know how long our medically dependent children will need our loving care. Sometimes parents get burned out in meeting the daily needs of their child to the point of sheer exhaustion, or worse yet, to the point of neglect or abuse of oneself or the child. It is a real, unspoken problem especially when the care lasts into the child’s adulthood. It is not talked about enough, but I have parents who contact me on a regular basis crying out for help in this area. Pace yourself for the long haul in case that is your unexpected journey.
4. How did you begin your relationship with Any Baby Can of San Antonio?
As we were a client family, it was easy for us to want to, one day, give back to our community through ABC. We knew the need personally.
Once our family was a little more stable in the routine of caring for Robert, I was asked to share Robert’s story at an ABC event. From there, I shared his story many more times along with the ABC staff. Eventually, I was so convinced that it was the most beneficial nonprofit for families like ours needing care “direction,” that I asked the CEO if she would consider me for a Board of Directors nomination. I was humbled to be voted onto their board, and I have served for almost eight years, including serving as the past Board Chair.
Any Baby Can is the only agency that offers three things that are vital to our communities:
1. No cost for services.
2. No income requirements. (Many community and government services have an income requirement that is difficult to meet for many families.)
3. No long waitlists. (As demand has increased, ABC is working diligently to reduce the time a family must wait for a case manager assessment.)
Any Baby Can in Austin has also done an excellent job here in serving many patients of ours from Child Neurology Consultants.
In addition to her many roles and operating this new online community, Juli also supports the “Kind Cards” and “Hilton Hotel Monthly Giveaway” initiatives to further help families in need.