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Can you imagine being a young mother and taking your baby home for the first time? Most new moms feel a little bit frightened – this helpless little bundle is depending on you for everything.
Now imagine being a young mother and taking your newborn home for the first time, but in this case your baby has complex medical needs. Caregivers sometimes have to meet huge challenges.
That is exactly what Nicole and her husband Jacob faced when they took little Kayleigh Hope home for the first time. Kayleigh was the smallest preemie in Maryland to ever survive until discharge.
“I was absolutely terrified!” Nicole reports. Her husband shared that feeling.
Kayleigh was born three months premature and weighed less than one pound. After ten months in the hospital, she was still on a ventilator and needed 21 different medications. She was a very fragile infant with many challenges ahead.
In addition to her medical needs, Kayleigh needed help developmentally. The natural milestones for most babies were not going to happen without professional help. Kennedy Krieger’s physical, occupational, and speech therapists stepped in.
Nicole explained how Kennedy Krieger therapists not only worked with Kayleigh, but also helped her, as a mother, in ways that are difficult to describe. “They would teach me what to do, and I would (practice) between visits,” she said.
Just as importantly, Nicole explained that the therapists “helped keep me grounded.” Having a child with special needs is very isolating for a caretaker. It can be overwhelming. Kennedy Krieger staff understood this and helped Nicole understand what to expect.
I would sometimes get impatient because Kayleigh wasn’t ‘getting’ things. But the therapists said that she eventually would – that one day it would happen.
That attitude and support helped Nicole cope with the challenges.
Without caregivers, whether they are parents, relatives, friends, therapists, or Kennedy Krieger staff, healing might not happen as quickly. That’s why we’re honoring all the caregivers.
Kennedy Krieger helps children like Kayleigh, but also supports parent caregivers who face daunting challenges and have thousands of questions along the way. Families like Kayleigh’s count on people like you to unlock the potential of so many of our young patients.