AMIE JONES: Many children that we see in our complex care clinic are on a medical Odyssey or diagnostic odyssey, and what they're looking for is a unifying diagnosis that helps explain what's been going on and what their child's been dealing with. And so when we see children who are on diagnostic odysseys, sometimes we're not sure who they need to see before they arrive and we evaluate them.
ALEXANDER GURFINKEL: It is very common for complex patients who come in with several acute issues, like Aaron did, to have a group of subspecialists to evaluate them in a very expeditious fashion. In Aaron's case, we felt like a little bit more expeditious approach was necessary.
ORLANDO GALAVIZ: Aaron was born a big, healthy baby. At his one-year birthday is kind of when it kind of opened our eyes a little bit. He was severely underweight, 1 percentile. His height was also in the 1 percentile. So he wasn't growing. He wasn't putting on weight. Our biggest worry was just that he was failing to thrive. We had a lot of middle-of-the-night type of conversations.
ALEXANDER GURFINKEL: We're here to make this a successful journey for kids who have chronic medical conditions, who especially go unanswered, understanding that the answer is there. And at Mayo Clinic, we'll do everything we can to find the answer.
AMIE JONES: One of the unique things about the Mayo Clinic Children's Center is that we have the full breadth of expertise, from fetal surgery to cardiovascular surgery to neurology and oncology. Being able to leverage the expertise across all of these different specialties in a very short period of time is a piece that really helps us find answers and deliver therapies and cures so much faster.
ORLANDO GALAVIZ: At other medical institutions, you know, you have to be put on a six-month wait in order to get in to get an appointment with a physician. Having the opportunity to have seen all the specialists in a matter of two or three days is a tremendous value.
PUA HOPSON: Aaron came to us with a finding of something called eosinophilic gastrointestinal disease, and then I was able to take it a bit further and say, you don't fit the picture of presenting with this as your only diagnosis. Within the whole week that he was here, we were able to get him in to at least six or seven more specialists, plus uncover his underlying diagnosis.
AVNI JOSHI: X-linked chronic granulomatous disease, or in short, we call it X-linked CGD, for the child, it has implications in terms of what can they eat, what can they do. Can they go out in crowded places? Do they need to be masked? So we kind get the ball rolling on saying, OK, we can put you on prophylactic antibiotics. Here are some immunosuppressants that will keep your autoimmunity under control. CGD is an inherited defect in your immune system. That means there is a genetic defect that can only be cured by bone marrow transplant.
MIRA KOHORST: I was fortunate enough to be a part of the team to help get him through the process of bone marrow transplantation. To be able to get that diagnosis and start the treatments for him, to get him feeling better, was a really beautiful thing to watch.
We do special typing to figure out who might be a good match for bone marrow transplant. The younger brother was a perfect match. He now is cured of his condition. We were all able to work together seamlessly and quickly to help make that process as easy for the family.
AMIE JONES: I love partnering with our referring providers so that after we see a child, we can connect back, talk about what those next steps are, and have a plan together. Our goal long term is that they don't need to continue to come back to Mayo Clinic, but that we can help serve them and determine a good path forward for treatments and therapies, and then to work with their local providers as that child returns back to that community.
ORLANDO GALAVIZ: It was 2 to 3 weeks after we left. He started really gaining weight. His energy level skyrocketed, and I mean, he turned into a different kid. I believe Aaron is a priority for everybody on Aaron's team. I feel like we're valued and we're cared about.
MIRA KOHORST: Together, We were able to do something really beautiful for Aaron.
