The first year is the hardest

“Having a baby with complex medical needs and being in the NICU for 48 days wasn’t what we had expected,” said Stephanie, mother to Madison who was born in January 2020 just before the COVID-19 pandemic began in the US. Stephanie recounts, “Dealing with the trauma of her birth, the uncertainty of her future, COVID, and parenting another young child was definitely difficult.”  Madison was born at 33 weeks and suffered brain damage due to loss of oxygen. Her primary diagnosis is hypoxic-ischemic encephalopathy (a type of brain dysfunction that occurs when the brain doesn’t receive enough oxygen or blood flow), and she was later diagnosed with cerebral palsy. 

Stephanie took Madison to a neurologist who recommended she reach out to VIPS for services as she could track with her eyes well, but couldn’t hold her gaze on objects for long. A pediatric ophthalmologist later confirmed that Madison has Cortical Visual Impairment (CVI); her eye structure and optic nerves are normal, but her brain struggles to process what she sees. Shortly after, Madison started to receive virtual visits from her VIPS interventionist, Michelle, in the fall of 2020. 

While these virtual visits were valuable to the family, they really began to notice a difference in Madison once Michelle was able to meet them in person. When she first started services, Madison struggled to maintain a gaze for more than a few seconds, sit up in her chair, and use her eyes during her sessions. But Madison has made great progress during her time working with Michelle! Now, she can maintain a gaze on many objects. She can reach and open her hands to grab objects. She mirrors and reacts to facial expressions, and plays independently with toys in front of her. Stephanie explains that the best part about VIPS is that we meet at their home. The home is the child’s first learning environment and is where they (and the parents) are most comfortable. Meeting families in their homes allows VIPS interventionists to teach the family how they can adapt their own space to help their child meet developmental milestones. Madison is thriving in her VIPS sessions because of the family’s dedication to implementing what Michelle has taught them in their everyday lives.

Early intervention services are life-changing to the future success of a child. Stephanie confirmed families in need of services shouldn’t wait- start as soon as possible! Early intervention services can provide families not only with resources and knowledge but also hope for the future that now looks so different than expected. Stephanie admitted that the first year of Madison’s life was the hardest. One thing that made that first year so difficult was comparison. It’s heartbreaking watching other children do things your child can’t. But Stephanie continues to see the positive in her little girl, “She is sweet, sassy, and silly. She loves when you give her your full attention and do things that make her laugh. Her smile is the best.” Madison is learning in her own way, on her timing, and this has brought hope to her family. Stephanie, looking back on those difficult times, now advises, “Your child may meet milestones much later in life, or maybe not at all, and that’s okay.”