Pediatric patients invited to join new Mended Little Hearts group this week
A West Liberty area family celebrated an important and very grateful day earlier this month — their son Luka’s first birthday on Sept. 6. It was an extra happy occasion considering the young heart warrior’s difficult early months of his life, which included two heart surgeries, home monitoring, cardiac follow-up visits every two weeks, and some very tentative moments in between for his parents.
Following Luka’s most recent 10-hour cardiac surgery in April, he is no longer on home monitoring, has no physical restrictions and only needs to take a baby aspirin once a day.
The brave toddler with bright brown eyes and an infectious smile is now breezing through his milestones as well. He’s learned to stand and is working his way toward walking and trying to keep up with his older brother, Oliver, age 4.
Dealing with a complex congenital heart condition was something completely new for Logan and Teresa. Their four-year-old does not have any heart issues, and neither parent grew up with any pediatric heart issues in their families.
So when Luka at two days old required emergency transport from his birthplace at Memorial Hospital in Marysville to Nationwide Children’s Hospital via Mobile Intensive Care Unit for treatment of heart issues, it came as a shock and was a whole new world to navigate for the local couple.
“It was a whirlwind, an absolute whirlwind,” said Teresa, who works as a coach at Crown Gymnastics. “I’m a planner and I want to know what to expect. I spent so long on Facebook and Google once we got his diagnosis.”
“It’s intimidating going into that big hospital,” Logan admitted, noting that his friend who works at the Columbus area children’s hospital gave their family lots of pointers for getting around.
“Teresa and I definitely leaned on each other through all of this, and our families and friends have been such wonderful support to us as well.”
‘Big Hearts, Little Hearts’
The newly launched “Big Hearts, Little Hearts” Mended Little Hearts support group also learned about Luka’s heart story before his big surgery this spring. Its members presented his family with a special teddy bear with a hand-sewn heart, a card filled with encouraging words and other resources prior to their hospital stay.
The group is a new branch of the Top of Ohio Mended Hearts support group, which has joined together adult heart patients in the community for three decades. The expanded support group is forming locally to uplift area families who are walking down this path with their young one’s pediatric heart journey.
This week, its members invite pediatric heart patients and their families to attend their regular meeting at 6 p.m. Thursday, Sept. 26, on the first floor conference room of the Mary Rutan Health Center, 1134 N. Main St., Bellefontaine.
A meet and greet will be part of the activities, and families will be presented with a Mended Little Hearts resources binder. During upcoming meetings, conducted on the fourth Thursday of each month at 6 p.m. at the same location, group leaders will guide pediatric members through the resources binder and provide time for sharing with one another.
The group wants to offer an opportunity for local heart families to connect over their shared experiences and to support each other, both through difficult ordeals and by celebrating successes and milestones for their young heart warriors.
It’s also a chance for children and teens to get to know others who can relate with their experiences and the ups and downs of dealing with a heart condition; along with the adult Mended Hearts members looking forward to the chance to mentor the youngsters.
Luka’s early days
Luka and his family will have much to share with “Big Hearts, Little Hearts’ about their special and unique heart journey from this past year.
After Luka’s transport by Mobile ICU to Nationwide Children’s Hospital at two days old, his father quickly joined him, but Teresa unfortunately wasn’t able to come to the Columbus hospital right away, since she was under restrictions while healing from post-birth issues and a C-section.
But she and Logan anxiously awaited news from their cardio team about their son’s condition after late-night echocardiograms, an ultrasound of the heart, to find out why his pulse oximetry readings were different for the various part of his heart and to check on a heart murmur.
The couple learned more about Luka’s myriad of heart issues, which included two holes in his heart (an atrial septal defect and a ventricular septal defect), along with a patent ductus arteriosus (PDA), coupled with aortic atresia and aortic stenosis.
The cardiologists spent about four days developing a plan, with several different paths, for Luka, which began with surgery when he was one week old.
A PDA stent was placed and his surgeon, Dr. Mark Galantowicz, also placed bands in different locations of the heart to restrict blood flow.
Luka came through the procedure with flying colors and after one week, the family finally got to take their little one home and be together again with big brother Oliver.
Teresa explained that Luka was what’s sometimes known as a “blue baby” because his oxygen saturation levels on a normal day were extremely low, hovering around 70-75.
One scary situation when Luka’s oxygen levels dropped into the 60s eventually led to medical helicopter transport to Nationwide Children’s Hospital. After a weeklong stay, his doctors determined a medication issue leading to the dangerously low oxygen levels was sorted out and he was cleared to return home.
In addition to keeping a close eye on his oxygen levels, Luka’s diet and fortifying his feeds were another important part of his home monitoring, his parents explained.
“We were working with a dietician to make sure he was growing and gaining weight well, which was so important before the second surgery that he would need,” said Logan, who works as an engineer for Honda Regional Development.
A big decision and cause for celebration
Logan and Teresa knew the timing of Luka’s second surgery could be somewhere between ages six months to one year, so it wasn’t too surprising when their cardiologist Dr. Corey Stiver told them earlier this year that they were getting to that inevitable point.
While the couple had previously been informed that a single-ventricle repair or a double-ventricle repair both were paths that might be considered, they quickly got behind Dr. Stiver’s recommendation for a double-ventricle repair for Luka. Dr. Stivers presented this proposal to the cardiology board at the hospital, and Logan and Teresa said they held their breaths waiting for the big decision.
“We were really hoping that they’d go that double-ventricle route,” Teresa said. “Otherwise, we were looking at doing both the Glenn procedure first and the Fontan procedure (later) for the single ventricle repair.
“Ultimately though, we knew this team totally had Luka’s best care in mind, so we trusted their decision.”
A double-ventricle repair was the final decision from their team, and April 22 was set as Luka’s big surgery day. The complicated procedure would involve repairing the infant’s pulmonary valve and attaching it to the aortic valve, creating a new valve. His ASD and VSD also would be closed, along with the closure of the PDA, and a conduit valve was installed outside of the heart.
“It’s a very complicated and weird fix,” Teresa said, explaining the intricacies of the surgery with a diagram. Her husband noted that their very experienced surgeon Dr. Galantowicz had performed these multiple procedures all at once only a time or two (but had performed the separate repairs involved in the complex surgery much more frequently).
The surgery was a resounding success and Luka was released from the hospital a week later. Within those initial days of being home, his parents were elated to see how he quickly rebounded to good health, and even learned to sit up on his own for the first time.
The family recently was able to return their home monitoring equipment and they’re enjoying the more playful side of having a toddler and preschooler at home. Luka will return for a follow-up visit next month with his cardiologist.
Sept. 12, one year following the initial surgery, Teresa reflected on her Facebook page about her son’s amazing story.
“If you would have told me then that today he’d be laughing with his brother and climbing all over me, I’m not sure I’d believe you, but I’m sure feeling blessed to be where we are today.”
For more information about the Top of Ohio Mended Hearts, contact president Bruce Norris at (937) 919-7213.