Neighborhood Member Alexia smiles as she watches her three-year-old son play with plastic letters on his bedroom floor.
“It’s a miracle,” Alexia says. “He’s my miracle baby.”
To be certain, a lot of moms feel that way about their firstborn children. But in Jayden’s case, it’s no exaggeration.
“After we cut his cord, he stopped breathing, so I didn’t have that skin to skin experience at all. They just took him,” Alexia explains. “His kidneys were enlarged. He couldn’t breathe on his own because they were pushing on his lungs. Once they took him out for me to meet him, he was already intubated and you could see his belly extended.”
Jayden would spend the first two months of his life at Women and Infants Hospital. He’d spend the following four months at Boston’s Children’s Hospital. During that time, doctors had to remove both of Jayden’s kidneys.
Petra Jackl, one of the Nurse Case Managers who works with Jayden’s family, calls the little boy’s situation at the time, “very complex. He had so many medications that he had to take just to maintain status quo. [Alexia] had nursing [supports] in the home, which had to be coordinated to try to just support mom and dad through this process of taking home this very, very sick baby.”
For the next few months, Alexia had to perform in-home dialysis at least twice a day. All the family could do was wait for Jayden’s little body to grow big enough to accept a new kidney.
“She relied heavily on me and she relied on me and on Katie, especially in the beginning just because there was so much she didn’t know,” Petra explains.
The “Katie” she mentions is Neighborhood’s Katie King, another Nurse Case Manager who specialty is caring for families undergoing transplants.
“My role is to support the caregiver, and in this case that was Alexia,” Katie says. “Each and every step of the way, we try to divert the path and make sure that it’s a straight path for her. I am kind of a defense. I get rid of those barriers and just make the path really clear.”
Neighborhood helped Alexia get the medical equipment, the medications, and all the support services she needed until, finally, at 13-months-old, Jayden was big enough for transplant surgery. By that time, the family found a match for the transplant: Jayden’s dad.
“So, one, they look exactly like each other, and two, they have the same kidney,” jokes Alexia.
That was about two years ago, and thanks to his family’s dedication and to Neighborhood’s support, Jayden is an energetic, fun-loving, intelligent little boy.
“It just makes me happy to see him be so happy and be so engaged and active and like a normal kid,” says Petra, who got down on the floor to make Play-Doh creations with Jayden during a recent visit.
“Both of my case managers have been great, it’s something that I recommend every family member,” Alexia says. “They make everything easy. It’s the best thing that has happened to me in my life. I feel like I have an advocate, a support system, a relationship.”
Katie acknowledges that keeping a little boy like Jayden healthy is a lifelong task. “He has had some setbacks, but we keep moving forward. We keep going. He looks great. He is great. It’s really a miracle. “
As those setbacks occur, Alexia knows she can count on Neighborhood.
“The case management program has taught me a lot too. When they tell me, you know, ‘This is getting denied, we need a prior authorization’, I already know what to do: Call Katie!” she says.
For Alexia, taking care of her son is possible thanks to Neighborhood’s “support system, not only for my son but for myself too, you know? They are there to hear me out, what’s worrying me, what assistance do I need?”
So impressed was Alexia with the care she’s received over the last three years, she decided to go back to school and get her Bachelor’s degree from the University of Rhode Island. She’s now working as a translator in a medical office. For Katie, who has been with Neighborhood for more than 20 years, this is one of the stories that remind her how important her job is.
“You know, I have had members tell me, ‘I don’t know what I would do without you,’ Katie recalls. “And I just tell them, it’s such an honor, it is my privilege to help them.”