When first-time parents Maggie and Steve welcomed twins Jake and Josh in January 2020, they were eager to see the boys’ personalities emerge.
“Early on, we noticed that Josh was paler and seemed more lethargic than Jake, and initially we thought this was just the very beginning of the boys having their own personalities, tendencies and looks,” Maggie says.
But after struggling to get Josh to eat, they insisted Josh be examined further. He was sent to the NICU for low oxygen levels at the delivery hospital, where a doctor suspected a congenital heart defect (CHD) and recommended they transfer their newborn son to Lurie Children’s Heart Center for further testing and care.
“We were in a state of shock,” Maggie says. While some CHDs can be diagnosed in-utero, Maggie and Steve were told both boys were perfectly healthy during the pregnancy. “Some parents have time prenatally to process, learn and prepare for a long medical journey, but we had to do all of this after becoming new twin parents.”
At Lurie Children’s, Josh was diagnosed with a severe single ventricle heart defect known as pulmonary atresia and unbalanced AV canal. He also has heterotaxy, which means his organs aren’t all in the right place and his heart is on the right side of his chest instead of the left side. He also lacks a spleen, causing additional concerns for his immune system.
Maggie and Steve met with Lurie Children’s Single Ventricle Center of Excellence team to discuss their son’s conditions, the open-heart surgeries he would need, and the round-the-clock care he would require at home.
“When we first met the Single Ventricle Clinic team, they described themselves as ‘the family we never wanted,’” Maggie remembers. “While we may not have wanted this diagnosis, we are so, so thankful to consider them as part of our family now. They were there for us day or night. Whether we had questions about Josh’s diagnosis, concerns about his health at home, or even insurance questions, they were there to help us figure it out. And they did all of this with a level of compassion and empathy that’s really indescribable. The team consistently helped us find options for us to both participate in Josh’s medical journey, especially when he was inpatient.”
At five weeks old, Josh came home for the first time, where he stayed in close contact with the heart experts from the Tele-Interstage Home Monitoring Program. The team monitored Josh in real-time and tracked his heart rate, oxygen levels, weight and nutritional intake, keeping him healthy and safe as he prepared for his first open-heart surgery. During this time, he also underwent several cardiac catheterizations in the hospital prior to his first open-heart surgery.
In August, Josh underwent the Glenn procedure, an open-heart operation that connects the superior vena cava, the blood vessel that carries deoxygenated blood from the head and neck back to the heart, directly to the pulmonary circulation system, alleviating some pressure for the single ventricle.
Following a quick and steady recovery, Josh returned home one week post-surgery. Maggie describes his progress as “tremendous.” He no longer requires a feeding tube, and needs fewer medications than he did before surgery. “Josh’s overall heart function has been very good and he’s becoming a very spirited, sweet little boy,” Maggie says. “His resilience continues to amaze us.”
Now at home as a family of four, Josh and Jake bond with games of peek-a-boo, and love spending time together. The brothers occasionally don special shirts, announcing Josh as a heart warrior and Jake as his sidekick.
At 13 months old, Maggie and Steve say the boys’ distinct personalities are on full display.
“They are yin and yang,” Maggie says. “Josh is sweet-natured and calm; he loves to share toys and can play independently with simple things. Jake is our wild child; he is very high-energy, loves to laugh, and requires a lot more hands-on attention.”
Josh continues to follow up with his care team at Lurie Children’s. In two or three years, he will likely undergo the Fontan procedure, the last step in the stages of surgeries to treat his condition.
Throughout his journey, Maggie and Steve say they are grateful for the expertise they have found at Lurie Children’s.
“Throughout all of this, we’ve realized just how lucky we are to be so close to a hospital with a nationally ranked heart center,” Maggie says. “We have said so many times over the last year how grateful we are to have Lurie Children’s in our backyard. Josh is in the best care and we are so grateful.