Camilla weighed just 3 pounds when she was born prematurely in June 2015. She was immediately put on life support, and shortly after, had a stroke that affected the right side of her brain.
"Doctors told me she may never walk, talk or breathe on her own," says Camilla's mom, Jill. "In fact, they warned me that we might not get to take her home from the hospital at all."
But Camilla grew stronger, and by the time she was 2 months old, she was able to go home. Over the next two years, however, Camilla faced a number of challenges that required help from many different specialists.
Camilla's stroke had affected the portion of her brain that controls her sensory system, and she had no way to filter or process all the information she interacted with throughout the day.
"For Camilla, everything comes into her brain at the same rate," explains Jill. "Every noise she hears comes in at the same volume, and it's alarming, whether it's the sound of my voice or a large truck passing on the road."
Faced with the uncertainty of what Camilla's future may look like, her family took an "all hands on deck approach," Jill says, focusing on different therapies and care plans to give Camilla the best chance possible for a healthy childhood.
A family finds hope for the future
In September 2017, Camilla was admitted to Children's Health℠ due to severe health issues.
"Camilla was having difficulties eating and was not gaining weight like she should," says Jill. "She was also having movement difficulties, experiencing hallucinations and was aggressive."
Given Camilla's unique challenges, she and her family were introduced to Michelle Thomas, M.D., Medical Director of Complex Care Medical Services at Children's Health and Assistant Professor at UT Southwestern.
Dr. Thomas and her team evaluated Camilla's condition and reviewed her health history to determine what was going on. For Jill, it was the first time she felt her input as a parent was truly valued by a medical expert.
"Dr. Thomas listened to my explanations about what was going on at home and gave them as much weight as the tests being run at the hospital," says Jill. "As a parent, I truly felt heard, and for the first time, we had hope for her future instead of feeling like we were just surviving."
Because Camilla was having trouble eating, a G-tube was inserted directly into Camilla's stomach to ensure she could get the nutrients her body needed. Almost immediately, her family saw a change in Camilla.
"Within the three months of being seen by the Complex Care Team, Camilla gained 6 pounds and grew 4 inches," says Jill. "Once she had the right combination of medications and was able to receive the nutrients she needed through her feeding tube, it made such a difference."
Camilla thrives with help from Complex Care and a furry friend
Over a year later, Camilla continues to be seen by the Complex Care team, which allows a number of specialists to evaluate her progress in one location. Her team includes her primary care physician, developmental pediatrician, neuropsychologist, dietitian, speech and feeding therapists and child life specialists.
For Jill, the coordination of care – and consideration each provider takes with Camilla – is priceless.
"They understand Camilla's challenges and often simply play with her on the floor before beginning any of the medical examinations," says Jill. "Because they all talk to one another about Camilla's care, they are able to design her care plan to exactly what she needs."
For Camilla, the true highlight of each appointment is seeing Boots, a golden retriever who is part of the pet therapy program at Children's Health. Camilla often practices taking Boots' vital signs, listening to his heart and checking his blood pressure, before her own vitals are taken, which helps ease her fears.
"It is seriously the most incredible thing I've ever seen," says Jill. "Camilla is usually terrified of doctors, but she practically skips down the hallways of Complex Care."
Through intense therapy, Camilla continues to gain tools that help her adapt and cope with the challenges she faces. She was even able to travel with her family to Alabama to watch her big brother, Bear, and his team win the Little League World Series – a monumental occasion for her family for many reasons, as Bear was also once a patient at Children's Health.
Camilla's family says the support from the Complex Care team has made all the difference in their journey.
"It has allowed my daughter – and also us as a family – to get our head above water and heal," Jill says. "Our life is completely different from anyone that we know, but we feel so much joy knowing how hard we have all worked to get to where we are today."
The purpose of Complex Care Medical Services at Children's Health is to achieve the triple aim of the right care, at the right place, at the right time through centralized, coordinated, comprehensive, and compassionate care with the intent to improve a child's growth and development. Learn more about our program and services.
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