Cerebral Palsy Experience Journal - Stella | Boston Children's Hospital

Summary

A mother shares the emotional journey of her daughter Stella, who faced health challenges from birth, including the potential for cerebral palsy. Stella's early years were filled with numerous hospital visits, sleepless nights, and struggles with basic activities like feeding. However, through innovation and determination, Stella's father created a pediatric beach buggy, allowing her to experience the world more freely. This inspired the creation of a non-profit, Stepping Stones for Stella, which has since helped over 400 families. The mother reflects on the strength and progress Stella has made, highlighting the importance of perseverance and support.

Takeaways

• 😀 Stella stopped moving in utero for about two weeks before delivery, leading to frequent hospital visits to monitor her heart rate and stress levels.
• 😀 Stella was non-responsive during an ultrasound, prompting immediate delivery, and she spent eight weeks in the NICU.
• 😀 Medical professionals suggested the potential for cerebral palsy, leaving the family uncertain about Stella's future abilities, such as speech, walking, or independence.
• 😀 The first month after leaving the NICU was extremely difficult, filled with sleepless nights, multiple 9-1-1 calls, and struggles with feeding and coordination.
• 😀 Stella had reflex issues and would immediately throw up after eating, leading her to sleep sitting up on her mother for the first four months of her life.
• 😀 Trusting preschool staff to care for Stella was emotionally challenging, though the mother was happy to see Stella participating in activities.
• 😀 Stella's grandfather, a retired engineer, designed a pediatric beach buggy to help her access the beach, significantly improving her mobility and quality of life.
• 😀 With the buggy, Stella was able to participate in field trips, go on walks, and access various terrains, which previously were difficult or impossible.
• 😀 Realizing the impact the buggy had on their lives, the family decided to create a non-profit, Stepping Stones for Stella, to donate buggies to other families in need.
• 😀 Over 400 families have benefited from the pediatric beach buggy, with heartfelt stories of families experiencing new activities like going to the beach for the first time.
• 😀 Reflecting on Stella’s progress, the mother feels immense pride and satisfaction, acknowledging that although the journey was challenging, the hard work in therapy and medical appointments has led to positive outcomes.

Q & A

What complications did Stella face during pregnancy and delivery?

Stella stopped moving in utero for about two weeks before delivery. She was non-responsive during an ultrasound, which led to her immediate delivery. She spent eight weeks in the NICU and was initially diagnosed with potential cerebral palsy.

How did the diagnosis of cerebral palsy affect Stella's family?

The diagnosis was overwhelming for the family. The parents were uncertain about Stella's future, including whether she would be able to walk, talk, or attend school. The mother expressed significant fear and sadness during this time.

What were some of the challenges Stella faced in the early months of life?

In her early months, Stella struggled with eating coordination, leading to frequent desaturation and multiple 9-1-1 calls. She also had reflux, making it difficult to feed her without immediate vomiting. Her mother had to sleep sitting up with her for the first four months to manage these issues.

How did Stella’s mother feel when Stella first started preschool?

Stella’s mother experienced a mix of emotions. She felt conflicted about trusting others to care for Stella but was also happy for her daughter to be part of the preschool experience despite her personal struggles.

What role did Stella’s grandfather play in improving her mobility?

Stella’s grandfather, a retired engineer, designed a pediatric beach buggy that could accommodate her wheelchair. This invention made it significantly easier for the family to take Stella out on various terrains, including trips to the beach and field trips.

What impact did the pediatric beach buggy have on Stella's life?

The pediatric beach buggy drastically improved Stella’s ability to go on outings and enjoy activities like apple picking. It allowed her family to take her on walks and to the beach, making everyday experiences more accessible.

Why did Stella's family decide to start a non-profit organization?

After experiencing the benefits of the pediatric beach buggy, Stella’s family wanted to help other families facing similar challenges. They started a non-profit called Stepping Stones for Stella to donate buggies to families in need.

How has Stepping Stones for Stella impacted other families?

Stepping Stones for Stella has donated over 400 buggies to families. Many families have shared stories of how the buggies allowed their children to experience things they previously couldn’t, like visiting the beach for the first time.

What emotions does Stella’s mother feel when reflecting on their journey?

Stella’s mother expresses pride and gratitude when reflecting on their journey. She feels proud of Stella’s progress and the family's resilience, noting that the hard work, including therapy and doctor appointments, has led to the positive outcomes they now see.

What message does Stella's mother have for other parents facing similar challenges?

Stella’s mother encourages other parents to persevere, reassuring them that while the road is difficult at first, it eventually becomes easier and less scary with time and effort.