When Saida brought her son Joshua to Children’s Minnesota, she thought he just had a bad case of the flu. But it turned out to be something no parent wants to experience. Shortly after being admitted to the hospital, Saida was told her 7-year-old son needed a new heart.
“I will always be grateful to the staff at Children’s Minnesota for saving my son’s life.”
Diagnosis
Testing revealed Joshua had restrictive cardiomyopathy – a rare form of the disease when the heart muscle becomes stiff and enlarged, making it hard to pump blood. When Joshua was put on anesthesia, his heart went into cardiac arrest, which unfortunately can be common in patients with this disease.
His care team quickly put him on extracorporeal membrane oxygenation (ECMO) – a lifesaving treatment used when a child’s heart or lungs are unable to do their jobs.
After being on ECMO for roughly two weeks, the kid experts in the Children’s Minnesota cardiovascular program switched Joshua to a Berlin Heart, a device that would pump blood for him until a new heart was found.
Setbacks
Joshua’s journey took another challenging turn as he waited for a healthy donor heart. He suffered a several hemorrhagic strokes – when a blood vessel in the brain breaks, flooding the brain with blood. As a result, he underwent multiple neurosurgeries to relieve the bleeding.
Saida worried her son who was always happy and joking around might never be the same. “There was a chance he was going be a vegetable – wouldn’t be able to move, talk or hear. But he’s alive and laughing today thanks to his care team,” remarked Saida.
Joshua’s resilience impressed everyone, including his care team. “Every single time he just pulled through. He defied the odds and exceeded expectations every single time,” said Holly Thompson, nurse practitioner and transplant coordinator at Children’s Minnesota.
Due to the strokes, Joshua’s status on the transplant waitlist had to be paused until he was healthy enough to receive a new heart. When he was reactivated on the list, he was top-priority for when a heart became available.
Waiting for a heart
Through all the ups and downs of surgeries and waiting for a heart, Saida remembers the amazing team that cared for Joshua.
“They were very attentive and would play with Joshua and offer him toys – he was never depressed, just always a very happy kid at the hospital.”
The care and support extended to Saida too. Because her primary language is Spanish, the care team used the interpreter services at Children’s Minnesota to effectively communicate and explain Joshua’s diagnosis and care.
Transplant
After spending one year and five months connected to the Berlin Heart, a healthy heart became available for Joshua. In May 2021, at 9 years old, Joshua had successful heart transplant surgery!
“The transplant went really well. He didn’t have any complications,” recalled Saida.
After his transplant, Joshua went through aggressive physical and occupational therapy at Gillette Children’s Specialty Care to relearn how to walk as well as other skills. Joshua was finally able to go home after spending almost two years in the hospital.
Saida was a little worried she wouldn’t know how to care for her son at home, but the nurses showed her everything she would need to know. “I always like that they taught me everything. Now, I feel more confident about taking care of him. I always saw the nurses as my family,” said Saida.
Since Joshua got back home he continues to improve with monthly visits to the Children’s Heart Clinic.
“From a heart standpoint, he’s doing fantastic. Last time he walked into clinic he blew me off the chair. I was so impressed,” said Thompson.
Children’s Minnesota Cardiovascular Program
At Children’s Minnesota we offer leading techniques for treating kids’ heart conditions plus a mega dose of heart in all we do. We provide a full range of cardiology services, from imaging tests to surgeries, from before birth into young adulthood. With more than 200 professionals from Children’s Minnesota and the Children’s Heart Clinic, we prioritize exceptional care, making our outcomes some of the best in the country.