Meikele has two children with uncommon medical conditions and she sees there is a serious lack of access to healthcare for them in the US.
Meikele is a mom with two children who have complex medical conditions. She has spent years fighting to get them the tests and treatments they need. She tells us not only the problems she has faced with lack of access to healthcare, but gives hope to those facing similar challenges.
Hi, I am Meikele Needles. I am a mom and caregiver to 2 kids with special needs. My youngest daughter was born in 2012. But it took until December 2018 for her to be successfully diagnosed with Chiari Malformation type 1. It was a long journey.
It wasn’t long before my daughter was born that we realized something was wrong. I did research and had some suspicions so I requested an MRI and a sleep study. It took 3 years of fighting to get it.
What prompted us to get her tested was she was having short term memory problems. She couldn’t remember eating, drinking, or simple instructions. She would get “stuck” putting on or taking off clothes. Sometimes she would choke while eating, drinking, or sleeping, and when sleeping would have up to 19 central sleep apnea (breathing stoppage) events per hour. And we all lived like this with her for 2,408 days of her life (yes, I counted) before she was finally diagnosed.
Once she got the tests I pushed for. she was diagnosed with Chiari Malformation type 1. Right afterwards, her symptoms began intensifying. Between the December 2018 diagnosis and January 2019, she collapsed, went into a spontaneous fever of over 105, and suffered 2-3 minutes of a seizure-like episode. In that moment, she lost all the skills she had learned in school up to that point. She emerged from the seizure not knowing who we were for a few minutes.
Not only did we have our little beauty to take care of and keep safe, but also her younger brother, who was born in 2014. He had a life-threatening medical condition around age 15-months that required him to get a feeding tube. Since then he’s been working hard to hydrate himself. He is also trying to digest food by mouth so his body can grow. All we know is that he has dysphagia (fancy word for choking) and sensory processing disorder but we don’t know why.
Insurance was a roadblock in receiving the specialty equipment my son needed for his feeding tube. Over and over we have had to show “enough proof” in the notes, in his symptoms and other test results to warrant the doctor giving us a referral for the next test or exam or study. They make straightforward things very hard which leads to lack of access to healthcare.
Before doctors took these kiddo’s issues seriously, we spent 2.5 years in the scariest “survival mode”. We were working around healthcare providers who kept wanting to “wait just a bit longer”. Not only does that approach extend a sick person’s suffering, but it drains savings. Then, my husband got laid off. We decided he would become a stay-at-home dad, which has actually been a blessing. But it meant I was working 80-hour weeks for about 4 years to keep the family afloat. It’s still not easy. Sometimes I wonder where money for gas or bills are going to come from.
In our very rural state of Montana specialists are scarce. But we’ve always been lucky. We’ve also had to push hard for out of state referrals. The lack of understanding of my kids’ unique symptoms and atypical presentation have been more of an issue. I think doctors forget that not all cases fit the symptoms list perfectly. No two patients are exactly alike. You know the saying, “if you hear hoofbeats think Horses not Zebra’s,” well, my kids are certainly Zebras!
We as Caregivers and parents shouldn’t be shamed and ignored along the way. That has happened to me when advocating for my babies. No one knows them like we parents do. What’s more, no one is more invested in their wellbeing. We love them and want to be able to prepare them safely for an uncertain future. We can’t do that when we don’t know what we’re fighting against, which is why getting answers promptly matters so much.
The parents’ struggle is a struggle to be recognized and have real representation in the decision making for our children’s care. To keep them safe, and to keep hope alive.
Once we have a diagnosis, we can find community support online from other patients and caregivers. Together, we share similar experiences, even if we’re at different phases of our journey.
For our family, Faith helped tremendously, giving me peace and support. Our Pastor told me “God only give his toughest battles to his strongest…”. I was feeling a bit cheeky and said “I wish he didn’t trust me so much! I’m really tired and need a break.” Truthfully, we caregivers need to be able to take a break.
For me, I would channel my stress into something positive. Even now, my method continues to be writing books inspired by my son’s Feeding Tube community. And now I also help other parent’s write and publish their own stories. I’m a firm believer that if you see a need, find a way to fill it!
These books have helped us connect and find a way to live more positively. We also have been able to teach our son to love the body he is in and the life-saving device (his feeding tube) that he just graduated from in October! Yes, his feeding tube came out and he is super excited!
We’ve gotten support from many places (especially family), but few have been as remarkable as the wonderful therapists who took leaps of faith with us. They helped our kids build skills, build trust and became a secondary support system for us as parents. When you see someone multiple times a week for multiple children you get to know them very well. They became invested in the care of these kids, we even had some come to book launches, visit us while inpatient, check on us at home after surgeries, even put together Christmas gifts when they knew times were especially tight.
I would love to connect with other Chiari and Feeding Tube Families! Our stories can be the key to someone else’s peace, I know the stories I saw in the hospital through my tears 4 years ago, while my baby was in surgery gave me peace. And I thank you, whoever you are, for bravely sharing your stories then. It made a difference.
Meikele Lee is a Master Stylist, married since 2009, mother of three living in Western Montana. Her youngest child’s medical complexities thrust her into the world of pediatric feeding disorder and Chiari Malformation. This fueled her natural creative fire and she began documenting their journey on social media. Meikele wrote her first children’s book in 2016, inspired by her son’s Feeding Tube journey. She has since added more books and they have won multiple Awards, most notably “My Belly Has Two Buttons,” a winner of USBBY‘s Outstanding Books for Young People with Disabilities Award, 2019. Her most recent creative pursuits have been illustrating and formatting books for herself and others like her who want to highlight children with exceptional needs. When Meikele is not cutting hair or writing she assists her husband in homeschooling their oldest children.
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