Meet Chula Vista six-year-old Mya. The 13 birthmarks she had as a baby turned out to be a symptom of neurofibromatosis (NF) – a devastating genetic condition that causes tumors to grow throughout the body. Before the age of four, she endured multiple MRIs, X-rays, EKGs, sleep studies, and blood draws, as well feeding, occupational, and physical therapy. She was also recently diagnosed with generalized anxiety.
Her mom, Jessica Jemente, describes her daughter as a “little warrior.” But braces herself every time Mya complains of a “tummy ache” or leg pain. Is something off? Is it a tumor?
Now, Jessica’s on a mission to spread NF awareness and connect with other parents going through the same struggles. I had a chance to learn more in this interview.
What are some of the unique issues facing caregivers who are raising children with rare diseases?:
Sometimes as a caregiver of a child with a rare disease it can be hard to find others in your unique situation that understand what you're going through -- someone who lives with the same struggles and whose day looks similar to yours. If your child has specific physical, dietary or mental needs it can sometimes feel isolating when trying to attend events or meet with others to play or join activities. The mental and physical stress that sometimes comes with caring for a child with a rare disease can be very hard and feeling isolated adds weight to this stress because it can be hard to find a sense of community and an outlet to discuss your struggles.
How can parents of children with rare diseases find support, especially if they need to relocate?:
For our family the biggest sense of support we found was through social media and the Children’s Tumor Foundation website. After our daughter was diagnosed we jumped on social media platforms right away -- looking up Facebook groups and finding Instagram hashtags related to her disease. We were able to connect with so many others in the NF community to ask advice, get information about doctors and clinics to look into, share our stories or even just vent to. We created a page for our daughter and have connected with hundreds of parents all over the country looking for a sense of community just as we were. The Children’s Tumor Foundation also played a huge part in creating a support system for us. We were told about their NF walk and sure enough there was one in our area at the time that Mya was diagnosed. This provided us with support and an opportunity to gather in person with other's facing the same struggles and really connect. At the time we had just relocated to Seattle so this was great for us. The Foundation provides so much support, events and information and it has been so incredibly helpful to us as caregivers. They even have a list of NF clinics in the US which was so important for us when we moved again. I would say to always look for a foundation related to the child's rare disease online and see what services they provide for support!
How can adults navigating covid-related concerns on top of their children's other health concerns?:
Now, in the time of higher covid-related concerns we have found ourselves doing therapies at home, and navigating telehealth visits and trying to help Mya adjust to all the changes without increasing her or our own anxiety. We are juggling her health needs and this strange new way of life just like almost every family in the world right now. Mya's yearly and 6 months checkups were all put on hold and I am left to wonder when she will get back to her normal "baseline" appointments schedule with all her specialists again. They are stressful appointments, yes, but also reassuring to have her developmental and baseline health stats, and I am missing those appointments being so regular now.
I am grateful that Mya has had no major medical issues since this pandemic started, but some parents and children are not so lucky. I've spoken with many other caregivers whose little ones' diagnostics were put on hold. Although this seems like no big deal to some, it's a huge deal for a caregiver who was just about to find out why their baby girl is having seizures occasionally, why their little boy is having vision issues and headaches so much, a caregiver that has just been told their child has a rare disease and is left with so many questions because their appointments are now delayed or not in person. I also know how important safety is not just for patients but the doctors and staff at all hospitals. Things are hard for everyone right now and I have to remind myself of that.
Just the thought of having to bring Mya into a hospital during a Covid surge for any reason gives me anxiety. I think to myself, "Will a phone appointment be enough? If she has to go to the emergency room, what risk am I putting on her? Is she at greater risk of catching Covid-19 because of her rare disease?" I know many are currently going through the same thought process.
What can caregivers do to help little ones navigate emotional and mental health challenges while they're navigating physical health challenges too?:
For us it is the "3 P's" planning, preparation and practice. Once she was old enough to comprehend, we would communicate the plan of the day or specific procedure, diagnostic, etc. When we arrived at the hospital, where would we go for parking, what might the room look like, where on her body would they be working and what they would do and such. If she had any questions or worries we would discuss those too.
Then we would prepare things for the day of. Would we need snacks? Activities to distract her? Certain clothing? What would she like to pick to take with her? Her favorite stuffy or a toy?
Next we would spend time practicing. Early on Mya hated the doctors and any kind of exam (what baby or young child does right?). So we went out and bought a pretend doctors kit and collected things to practice and play with. Bandages, gauze, tongue depressors, anesthesia masks, anything we could get that we knew she would come into contact with. I remember the nose cannula and the sticky putty that held on the wires for her sleep study were the worst for Mya. So we asked for 2 nose cannulas at her doctor's office and we all took turns trying them on, wearing them and being silly as often as we could. Then we would use playdough with string and stick them on our heads and bodies pretending they were the wires. Another big struggle was taking her blood pressure (which is VERY important to monitor with NF patients). We would take turns squeezing our arms to see how strong we were and how tight we could squeeze while we counted. We were even able to take home a few pediatric arm cuffs to practice/play with. I would say of the "3 P's", practice was the most important and beneficial for Mya. It really gave her a sense of confidence and control when it came time to do the real thing.
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