Where Kinlee lives with her family in New Mexico, there is a minimum 6 – 8 months wait for therapy services. Kinlee was officially diagnosed with a vascular ring when she was just 2 years old and her family was informed, she would face a surgery and a long recovery at Rady’s Children’s Hospital in San Diego. While vascular rings can be resolved with a surgery, any open-heart surgery on a toddler is something that is going to affect the entire family in so many ways. “At first, I was somewhat confused when Kinlee’s Cardiothoracic surgeon recommended Ollie Hinkle Heart Foundation (OHHF) to us in a surgical consult and provided us with their information. I did not know at the time that mental health support for our family would be so needed. Mental health services for Kinlee really made sense. But taking his advice, I reached out to OHHF and sought services for our family, weeks prior to surgery. However, consistent with my own failed attempts, it appeared difficult to establish any care for Kinlee because of the limited providers in New Mexico that could accommodate her age. Instead of giving up or placing the burden back on me to find someone to help Kinlee, like many providers had, OHHF reached out and proposed virtual music therapy for Kinlee. Because her surgery already took place, and we could see some emotional impacts of the surgery and her challenging recovery, we jumped on the very gracious opportunity to connect with Christy Merrill (featured in this post)”, says Ashleigh.
During music therapy, Ashleigh has noticed that Kinlee would often direct the music therapy conversation to other areas, toys or questions that seemed off-track from where they wanted to be. “But instead of saying, ‘no Kinlee,’ ‘let’s focus here’, or ultimately re-directing Kinlee to the specific task at hand, Christy has successfully been able to incorporate whatever left turn was given, back into the song or activity. This incredible skill has given Kinlee autonomy, which she so desperately needed, while providing subtle mental health support appropriate for her age-level and attention span,” remarks Ashleigh.
Kinlee’s parents and doctors first noticed that she had suffered from considerable overstimulation during her lengthy time in a critical care ICU. Overstimulation is common for many patients in critical care. Kinlee had an IV in every limb, a central jugular line, a chest tube and a significant chest incision, regular dressing changes, maintenance, and assessments by so many different providers required her to endure so much. “The beeping, buzzing, procedures, and constant parade of clinicians, nurses, therapists, and supportive staff coming in and out, is a lot for a child, who developmentally is unable to fully understand. Because of her trauma, we now use music to help calm and get Kinlee back to baseline, when she often displays feelings of overstimulation. The music therapy has given her the ability to process some of what she has gone through, while giving her some healthy coping skills,” says Ashleigh.
It’s not just Kinlee who has benefited from OHHF’s therapy. Six weeks prior to the big surgery, Kinlee’s older sister was required to pause all her extracurricular activities, social outings with friends or family and routine visits to stores for shopping. “At the request of her Cardiac-surgery team, it was imperative that we kept Kinlee well. Any illness, cold, or infection would likely delay the surgery for an additional six weeks. If my husband and I left the home for any reason, we wore masks. My daughter would wear masks when interacting with Kinlee, since she was unmasked at school. We didn’t leave the home unless we absolutely had to. This was so hard for my daughter, especially after the COVID-19 pandemic was very challenging for children. As much as she understood the reasons for all the drastic changes and as much as she loves Kinlee and would do anything for her, the six weeks prior to surgery and the impending 12 weeks after, would be so hard on her. It did not change how isolating it can feel to cease all your regular activities. I, too, was struggling with this isolation. I was in the middle of my third semester of law school, and I had to pull Kinlee out of school and find ways to work remotely. I had to sacrifice many opportunities, in a very competitive field. My husband was on a military trip for this time and any socialization I had was limited to Kinlee and my daughter when she came home from school, for several months. Managing Kinlee’s medical needs and out-of-state care is a full-time job. While juggling that, law school and solely caring for Kinlee at home, I could somewhat relate to what my daughter was experiencing. Even though I know it was all to keep Kinlee safe and healthy, it was a difficult time. Knowing these arrangements would need to similarly be in place after the surgery, I was worried about the overall impact it would have on my daughter. OHHF was able to quickly match her with a local therapist, who has provided her the necessary support to understand her feelings and process what she is also going through. OHHF was also able to quickly match me with a provider, as well. Though I didn’t know what I needed or would experience in the weeks ahead, the support was invaluable and truly helped prepare me for such a difficult and traumatic time,” says Ashleigh. She continues, “Despite the need for parental support of a child who is sick, I think it is so much more important to remember that siblings of a medically fragile child also silently experience a loss and experience their own daily challenges. They now feel they must take a back seat, compared to their sibling, who requires so much caregiving, accommodations, and personal attention. I could not be more grateful that Kinlee’s surgeon provided me with a brochure for OHHF, which led to the establishment of services, prior to the surgery. The surgery itself was somewhat mild, compared to the emotional toll Kinlee and our family had and continue to take.”
Children, particularly young children with a limited ability to adequately understand complex trauma, use music therapy as a translator to process emotions and experiences. Due to her vascular ring, Kinlee had not known what it was like to eat or drink without choking, gagging, or experiencing a painful swallow, since birth. Having always known that pain prior to surgery, Kinlee is now experiencing and exploring eating painlessly for the first time, post-surgery.
“Since we started therapy, Kinlee is now able to put some words around her experiences for the first time. ‘It doesn’t hurt’ has been a new communication skill when Kinlee eats or tries something new. Recently, while at Costco, Kinlee tried a corn dog. For most kids, their parents wouldn’t think twice about this experience or attach any sentiment to it. But for Kinlee, this is real food that differs greatly from her very limited foods she feels comfortable eating. Though we always are actively encouraging Kinlee to try new foods or expand her diet, she often is scared. New foods have often been a very challenging emotional and physical experience for her. And despite several declined offers to try a corn dog throughout the last two years, Kinlee asked to try it one day. This was a food that was very different, that she would have to chew and swallow. It was a very stressful moment leading up to her reaction. But as parents, we can’t tell you how excited and relieved we were to see the experience of trying, enjoying and simply eating a new food. Kinlee loved it and even said it was the ‘best corn dog ever!’ We now have one more approved choice in our home. That alone has been so healing to Kinlee and helpful for us.” says Ashleigh.
While Kinlee and her family still have more recovery ahead, they are confident that with the resources being offered through OHHF, they will have the support they need to navigate successfully.
To learn more about OHHF, please click here.
