With Chelsea's extreme motivation and CSH's treatment plans, she continues to thrive in her day-to-day life!
Reflecting on the past seven months, her mother is proud of the challenges CSH has helped Chelsea overcome.
Tashna Angell and her three daughters were overjoyed when they welcomed the newest addition to their family, Chelsea Cover, into the world. Chelsea was born a healthy, happy baby until her mother began to notice developmental delays in her motor skills around twelve months old.
"Chelsea was not clapping, calling her sisters by their names, or maintaining a healthy growth rate, which raised red flags. Also, Chelsea could not swallow, had constant cold symptoms, and was vomiting nonstop for extended periods of time," says Tashna. Chelsea was taken to an emergency room where many tests were performed, but the physicians cleared her of all medical conditions. As a parent, Tashna's instincts encouraged her to continue searching for answers as Chelsea was getting worse.
Searching for Answers
Chelsea's condition was escalating at an alarming rate, and she was now experiencing seizure-like symptoms. Although medically cleared at the emergency room, Tashna requested additional testing for Chelsea. Her family took Chelsea to a second medical center and were stunned when they received news that her MRI revealed a mass on her brain.
Still lacking a diagnosis, the medical center discharged Chelsea. Physicians informed the family that further test results would take months. Chelsea’s health was quickly declining so she was rushed to another local emergency room, where she was admitted to their Pediatric Intensive Care Unit (PICU). In the PICU, Chelsea was given a tracheostomy and feeding tube. During her three-month stay, doctors constantly monitored her heart, and she relied entirely on tubes to keep her breathing.
As Chelsea’s health declined, her three sisters, Ashley, Zoey, and Basillia, were encouraged to visit her. She was weak, and her muscles weren’t moving, but her sisters visited, and sang her songs to motivate her. Chelsea’s condition took a toll on the entire family. Her “little big sister,” Basillia, was acting out in anger that her sister was not home. She was hiding under the bed, going in the closet, crying, “where’s my sister” and sleeping in her crib. Tashna said, “It was taking a toll on me, and I had to keep strong for everyone.”
One afternoon, Tashna's greatest fear became her reality; Chelsea's cardiac monitor displayed no heart rhythms, she had flatlined and was not breathing. Tashna was rushed out of the room by the medical team, and fortunately, a resuscitation to save her was successful. Tashna described seeing her daughter flatline as "feeling my own breath leave my body." Soon after, doctors suspected she had Leigh's Disease, a rare inherited neurometabolic disorder affecting the central nervous system. Later, she was officially diagnosed with both Leigh’s Disease and Charcot-Marie-Tooth Disease- Type 2 (CMT2). It is one of a group of conditions that cause damage to the peripheral nerves. "Physicians described Chelsea's diagnosis of Charcot-Marie-Tooth Disease- Type 2 (CMT2) as something you must go digging to find," says Tashna.
Tashna shared, "Physicians explained that the disease moves quickly, so arrangements needed to be made. I was asked if I wanted to pull the plug. Our family chose to preserve life, we didn’t care what was needed, so we gave Chelsea the option to pull through, which is what she did because Chelsea is a little fighter."
The Next Steps for Chelsea
Physicians at the PICU highly recommended Children's Specialized Hospital (CSH) Inpatient Facility in New Brunswick as the next step for Chelsea. CSH extended a warm welcome to the family and immediately developed a therapy plan for Chelsea in August 2022.
Chelsea then went to her primary care doctor, where her health was progressing. Orders were sent to CSH to wean her off the vent. They turned the vent all the way down to almost room air, and she tolerated it very well. They took her off of the vent, and Chelsea was finally relaxing. She was off the vent for over an hour, and doctors realized she could breathe on her own.
Inpatient Experience
After starting inpatient therapy at CSH, the family established confidence in Chelsea's recovery process. Chelsea was able to be off the ventilator on her birthday, November 8th, for 24 hours. Breathing on her own was a massive accomplishment for her! Her anticipated discharge date was Thanksgiving, and the family looked forward to having her home for the holiday. However, due to unforeseen respiratory issues, she was not discharged from the CSH inpatient program for another few months.
In the upcoming weeks, Chelsea thrived during her inpatient therapy sessions. Chelsea loved sitting up, and her care team motivated her to continue with other functions as well. She worked on a variety of tasks with Megan Kret, CSH Occupational Therapist. Megan stated, "Chelsea and her family were such a joy to work with. They showed such determination for their goal of bringing Chelsea home to be reunited with their family. I am so grateful for the opportunity to be a part of their team here."
Natalie Porcella, CSH Senior Physical Therapist, also helped guide Chelsea in rehabilitation. "Chelsea and her mom were and are the best! I remember the first time she was able to really interact with me; I was almost in tears! I moved from one side of her bed to the other, and she watched me walking back and forth and gave me that "side-eyed" look. She later started smiling and blowing kisses with her hands to her mouth, and again, we were so amazed by her,” shared Natalie. “When Chelsea was ready to go, we were all so happy about how far she had come (she was now able to sit with support and hold her head up, whereas she wasn't able to at the start of the session; she was able to hold a tambourine and interact with her toys successfully, she was able to sit in her stroller and play with her sisters) and we were so happy that she was able to go home and be with her family."
Tashna told us, "At first, I did not want to hold Chelsea with all of her vents and other tubes, but when she came to Children's Specialized Hospital, and with the great training they provided, I got the confidence to be comfortable enough to hold her and do what is needed for her." Chelsea was discharged in January 2023 and was now able to be back with her loving family.
Life After Inpatient Treatment
Reflecting on the past seven months, Tashna is proud of the challenges Chelsea has overcome. "My greatest hope for Chelsea is that she will live a normal life, all her muscles will regain their strength, and she will be able to communicate. That she will talk, stand, run, play," Tashna says. As Chelsea continues her journey, she’s still an active toddler, who loves reading books, playing with Legos, and listening to
music. Her family sang "Sing To Me" by Jhene Aiko to Chelsea daily, instantly becoming her favorite song. Tashna played it for her every day while she was in the hospital, it’s a "beautiful and inspiring song."
For families going through a similar situation, Tashna's advice is, "Don't give up and keep hopeful…if you see anything with your child that looks off, don't delay and jump right on it. If you are not pleased with what one pediatrician is telling you, as a parent, seek help elsewhere. Chelsea could have passed away at home if I was not persistent because it seemed as if she just had a cold. Take whatever measures to get the help you need."
She believes that every hospital, parent, and guardian should advocate for their children. Tashna highly recommends CSH to other families thanks to the professionalism, fantastic staff, and clean environment. Most importantly, she emphasizes the excellent training provided to families whose child is being discharged.
Her family believes that Chelsea's recovery was a miracle. She continues to improve daily while sleeping with her ventilator on minimal settings. She now pulls herself up with the help of her mother's hand and sits up with little to no support. She is alert and understands the words she hears. She also says "no" if she does not want something, and her family looks forward to hearing her say "yes" in the future.
Chelsea is continuing her journey at Children’s Specialized Hospital Outpatient Center in Union where she was evaluated by our Special Needs Primary Care Physician, Dr. Lauren Martin. Dr. Martin, said, "I really love this family. She was in our inpatient rehab unit for a while and she came a long way there after her acute hospitalization. I look forward to caring for her as an outpatient!"
Chelsea is currently at full weight, and plans are being arranged to remove both the feeding tube and tracheostomy. However, tissue has formed around the tracheostomy tube, so she will need an extra procedure to remove it. Once the tracheostomy tube is removed, Chelsea will undergo a sleep study. With Chelsea's extreme motivation and CSH's treatment plans, she continues to thrive in her day-to-day life! In the coming weeks, Chelsea will begin outpatient therapy to move forward on her road to recovery.