Abi and Toyin are praying for one thing – their family to be reunited at home. In March 2023, the family’s world turned upside down when their youngest daughter, 4-year-old Temidire, “Temi” for short, was diagnosed with dilated cardiomyopathy and placed on a heart transplant list only a few weeks after her birthday. She’s been in the cardiovascular care center (CVCC) at Children’s Minnesota with her family by her side ever since.
Worsening symptoms
It was shortly after Temi’s 4th birthday in February 2023 when she began showing symptoms. She started coughing and holding her stomach. Abi and Toyin took their daughter to urgent care where she was diagnosed with pneumonia and given antibiotics. Her cough got a little better but didn’t go away completely.
Three weeks later, she started having more symptoms, including throwing up, poor appetite and fatigue. It was a Friday night, and the family was out celebrating Temi’s older sister Ireoluwa’s 6th birthday at a restaurant and arcade. The typically active Temi hardly ate and didn’t have the energy to run around with her sister and older brother Akorede. She wanted to go home. Temi was so tired she fell asleep in the car. When they got home, she asked for a smoothie but after the family went out to get one, she could only manage a few sips. She had thrown up on Friday, Saturday and Sunday. Abi and Toyin decided it was time to bring Temi to the emergency department (ED) at Children’s Minnesota in Minneapolis.
From ER to inpatient
Temi and her parents arrived in the ED on Monday. A chest x-ray showed she had an enlarged heart and an echocardiogram (echo) revealed her heart wasn’t functioning as it should. After the echo, the family remembers the doctor coming in and saying Temi was very sick and needed to be admitted to the cardiovascular intensive care unit (CVICU).
In the CVICU, the family learned Temi had dilated cardiomyopathy – a disease that impairs the heart’s ability to pump blood to the rest of the body – and was in heart failure. She was put on oxygen and medications to try and improve her heart’s ability to pump blood, but that was not going to be enough. Her heart was going to need the support of a ventricular assist device (VAD) – also known as a heart pump – and eventually a heart transplant.
“Hearing this about my daughter Temi was almost more than I could take,” remembered Abi. “It was as if I was in another world.”
For Toyin, who is a registered nurse by training, it was difficult to imagine this for her daughter. “When the doctors started talking about VAD and transplant, I thought, ‘are you serious?’ My heart almost jumped out of my body,” described Toyin.
Surgery
In April 2023, Temi had surgery to implant a left ventricle assist device (LVAD) in her left heart chamber to help it pump blood to the rest of her body. During surgery, the care team found that the right side of her heart was getting weak, so a second, temporary right ventricle assist device (RVAD) was put in to support her right ventricle. The care team knew the RVAD would only be needed temporarily, therefore Temi’s chest was left open after surgery, covered in mesh, until the right side of her heart recovered, and it could be removed a few days later.
Family-centered care
After surgery, Temi began feeling itchy, it was likely a side effect of the pain and sedation medications. Her care team tried medications and lotions to relieve the itching, but nothing was helping. Then, Abi and Toyin remembered palm oil, an element in traditional medicines in some regions of Africa. They brought some from home and asked to try it on Temi. At Children’s Minnesota, the care teams welcome families to use remedies important to their culture and tradition. Once the palm oil was deemed safe by the care team, it was approved – and worked.
“Palm oil worked like magic,” said Abi. “Temi would sleep for a couple hours. Wake up itchy and I would reapply until the sedation medications wore down and she wasn’t itchy anymore.”
Staying in the hospital for an extended period can be hard. For that reason, there is a team of Children’s Minnesota kid experts, including child life, social work, psychology, occupational therapy and physical therapy teams, who join together to give patients like Temi something to look forward to. They’ve hosted a “Bluey”-themed pizza party where Temi played the cashier and handed out “Temi-bucks.” There was a parade through the CVCC unit to mark her 200th day as an inpatient. She’s also been granted several Little Wishes.
The VAD is not a permanent fix for Temi’s heart failure – she needs a transplant. But in the face of all this, Temi has an incredible attitude, and you can always find her laughing and playing. Her brother and sister come to visit and play on weekends. Abi and Toyin are praying for the day their family will all be one again at home.
“We believe in the power of prayer and pray for a transplant,” said Abi. “When we are all in one place, we will be reunited.”
