John’s story is one of surprises and hope. And, it all started when Nay was feeling sick at home in Togo, Africa. She was treated for malaria but then boarded a plane to visit her sister in the United States. She was still feeling sick so she went to the doctor to see what was wrong. “That’s where I learned I was seven months pregnant with John,” said Nay.
After Nay found out she was seven months pregnant, she met with a midwife at Park Nicollet Women’s Center. At the 28-week appointment, her midwife saw some concerning cardiac issues on her ultrasound. Nay was referred to Minnesota Perinatal Physicians for a level two ultrasound and a fetal echo. That’s where they found out Nay’s baby had congenital heart disease.
Because of this, Nay had to go in for an ultrasound every week until John was born. The doctors told Nay that her baby may need surgery or catheterization procedures shortly after birth.
On Sept. 2, 2018, Nay gave birth to her baby, John, at The Mother Baby Center at Abbott Northwestern and Children’s Minnesota in Minneapolis. The doctors had to immediately rush John into the cardiac intensive care unit (ICU) for testing and therapies to help save his life. “The way he was breathing, myself, I saw it, and I knew something was very wrong,” said Nay.
And then, Nay received bad news. “They told me my son was very sick.” She found out John was born with pulmonary atresia with intact ventricular septum. This is a rare defect where an abnormally developed pulmonary heart valve (which is between two of the heart’s chambers) doesn’t open. It prevents blood from flowing through the heart and into the lungs to receive oxygen.
John underwent his first lifesaving catheterization procedure at just 2 days old. This helped improve blood flow to his lungs and it allowed time for doctors to devise a longer-term plan for survival.
This became very overwhelming for Nay. “At this point, I couldn’t speak English so, I was using a translator,” Nay said. “I’ve never seen any big hospital like this hospital. I felt like I was living a movie.”
The need for a heart transplant
With most heart defects, there are a variety of options for kids that can help fix or repair the heart. But John’s care team at Children’s Minnesota found that those wouldn’t be enough. John would need something more – he would need a heart transplant.
“Within several days, Nay had heard unpleasant and bad news about her son [related to his condition],” said Dr. R. Erik Edens, pediatric cardiologist at Children’s Minnesota. “So, I wanted to talk her through that and walk through what’s involved in a heart transplant, the risk and benefits, and how his life could turn out if he has one [a transplant].”
John wasn’t even 5 days old when he was listed for a heart transplant on Sept. 7, 2018. As he waited for a heart he became unstable, was intubated and eventually was put on extracorporeal membrane oxygenation, or ECMO and so much more.
But after being on ECMO, John stabilized.
Nay and John finally received some good news. John would get his heart transplant on Dec. 9, 2018!
Children’s Minnesota’s first heart transplant – a success!
Dr. Edens has cared for over 200 heart transplants patients in his career. However, this was the first heart transplant done at Children’s Minnesota – an exciting milestone!
Nay and her little sister are the only two in their family in the United States so, she was her support system. “The day of the heart transplant, everyone was there,” Nay said. “My social worker, a pastor, it was so helpful.”
The surgery was around 10 hours in total, performed by Dr. Robroy H. McIver, pediatric cardiovascular surgeon at The Children’s Heart Clinic. “Things went exceptionally well,” said Dr. Edens.
Nay’s experience with Children’s Minnesota
Dr. Edens knew Nay would get through this with John in her arms. “I quickly realized Nay was a very strong person,” said Dr. Edens.
And Nay was so grateful to be at Children’s Minnesota.
“The support for me as an African, you know, because of everything that was happening in this country before I got here, the support I had at Children’s [Minnesota] hospital was amazing for me,” Nay said. “The nurses, the hospital, the doctors … the experience with them was so like, ‘wow.’”
John goes home
John and Nay went home on April 8, 2019. They have to come back to Children’s Minnesota for follow-up appointments and to check in on his new heart, but overall, John is catching up on his time just being a kid. Nay says he’s always climbing on things and running around.
“I’m just smiling because my son is doing so good. He will just push you to live,” says Nay. “After all he has been through, he fights and he still is the best he can be. John is doing amazing.”
Nay is so grateful to have the care and wrap-around services she and John received at Children’s Minnesota and for everything the team did to help John live his life to the fullest.
“He was coming from zero, not like everybody [else]. So, it was a big process for him. But, my son keeps achieving things slowly but surely.”