Patient Stories

Mother Thankful for Years-Long Partnership with Pediatric Palliative Care Team

Pedro was like any other baby. He was even ahead of the curve on certain milestones; sitting up by six months and beginning to try to stand. But around that same time, subtle changes began to appear: respiratory issues, trouble sleeping, and frequent crying. His mother Paula initially chalked up most of it to typical baby challenges. But over the next several months, as she and doctors began to see regression, and watched Pedro struggle with his balance, it became clear something was wrong.

At 16 months old, following months of uncertainty, Pedro was diagnosed with a rare neurological disease – infantile neuroaxonal dystrophy – which has no cure. The diagnosis was devastating to Paula and her motherly instincts kicked in.

"After the initial shock, the first question I asked was: what can I do to minimize his suffering?” said Paula, who understands English, but speaks through a Portuguese translator to better convey her thoughts. “I wanted to give him the best quality of life possible. The doctor said the main thing I could do is love him well. That was four years ago.”

A Team Built for Comfort Care

About a month after Pedro's diagnosis, Care Dimensions' Pediatric Palliative team was brought in to support both Pedro and Paula. Their goal is to provide comfort care, which includes regular visits to their home, and communicating with Pedro’s doctors about what they’re seeing. The rarity of Pedro's condition presented unique challenges for everyone involved.

"Pedro's diagnosis is so rare, it hasn’t just been a learning process for mom, it's been one for us too,” said social worker Angela McMannus, who speaks Portuguese and acts as a main translator for the team. “We’ve been with Paula and Pedro for so long, we’ve seen the progression of the disease. Because of that, we’re able to be strong advocates for him when speaking with other care providers about what he might need to live a more comfortable life.”

As his care plan has evolved to best meet his needs, the team approach has remained comprehensive and collaborative. Nurse Erika Cheever joined the team last fall and sees Pedro weekly.

“Seeing him every week, you can pick up on small changes and adjust the care plan as needed,” said Erika. “Paula is obviously with him all the time and she’s Pedro’s number one advocate. So there’s also a lot of discussion with her and the team about what she’s seeing. And then we’re able to problem-solve together.”

The Power of Music and Touch

Pedro now spends much of his time lying in bed or sitting in a chair. He’s non-verbal, but Paula notes that he likes toys that light up. And she can feel that he’s a very affectionate child. He has several loving cousins who come and visit, knowing to be gentle during their time with him. Some decorations from his 5^th birthday party remain up several months later because Pedro enjoys the colors.

Pedro's neurological condition means that traditional comfort measures don't always work, but his mother discovered something remarkable: music has an almost magical effect on him. There’s even specific music that she’ll play to alleviate spasms or symptoms.

A Care Dimensions music therapist, KT Bagley, will come to the house to play guitar and sing for him. KT even came to see him during a difficult stay in the hospital last summer.

"During a long hospitalization last year, he was in distress, his blood pressure was really high, and his heart rate was really high,” said Angela. “And as soon as the music therapist came and started playing for him, all of those came right down immediately."

Massage therapy has also been a major benefit. Pedro, who often cried from discomfort, now benefits from the expert care of Marcia Demenezes, a massage therapist at Care Dimensions. She has not only helped Pedro relax, but has taught others how to provide the same comfort.

The Comforts of Home

For Paula, keeping Pedro at home has been a top priority.

"Caring for Pedro is very complex,” said Paula. “When he's in the hospital, he goes into stress and all his symptoms are worse, but when he's at home, he is much calmer and we can take care of him much better. I’m able to keep him home more often with the support of Care Dimensions."

Paula feared that the cherished time at home was ending last summer, when his health began to further decline.

“The doctors there told me that our new home was going to be the hospital; that he was probably going to be spending more and more time at the hospital than at our house. I didn't want that. And thanks to Care Dimensions, that hasn't been the case."

Lessons in Perseverance

During that hospitalization last summer, medical providers officially changed Pedro’s care plan from palliative care to hospice. His diagnosis has always been one without a cure, but this step signified that his time was growing shorter. Paula reflected on all they’ve been through together.

"He's a very adorable child, and that's what gives me a lot of strength. He's so small, but he's taught me so much. He's taught me not to give up, to persevere."

The Care Dimensions team remains with them along Pedro’s hospice journey, continuing to keep Pedro comfortable.

"Symptom management depends,” nurse Erika explains. “Sometimes it's respiratory, sometimes it's pain, sometimes he's having a good week and it's great to see him when he’s having a good week."

Paula emphasizes the human element that makes Care Dimensions special.

"The Care Dimensions staff who have been with us are excellent. They're very human and caring, which is something that, to be honest, you don’t always feel when you’re talking with medical professionals. The way they talk to me and interact with Pedro, it's acknowledging that children who have medical complexity have a place in our society where they are well cared for."

Click here to learn more about the pediatric program at Care Dimensions.