Why We Connect for Our Children
A big problem in a tiny heart.
When Junior was born, in the fall of 2019, he was at 27 weeks’ gestation and weighed two pounds. Most of his organs were still developing, and he faced many health challenges. But perhaps the biggest was his heart. The valve between the two major arteries, which is open while a baby is in the womb, had failed to close, and blood was going to the wrong places. Connecticut Children’s interventional cardiologists were able to use a catheter to place a tiny mesh coil—the smallest such device ever placed in the state—to close off the opening and get his heart working right. Today, Telmo is thriving, a lively, loving three-year-old.
Missing genes and the power of love.
Five-year-old Mona is a one-of-a-kind girl. Literally. Her neurologist says she is likely the only child in the world who is missing two particular seizure-related genes.
In addition, Mona has something called secondary adrenal insufficiency, which impacts regulation of most of your bodies functions. With these conditions and associated symptoms, Mona requires constant attention, which means her parents have to work in shifts at their jobs, taking turns to be with Mona. And yet they are nothing but grateful.
Lucas was struggling.
Described by his mother as ambitious, then three-year-old Lucas had developed some very challenging behaviors early in the pandemic. Some might be quick to consider them typical for a toddler but his parents knew otherwise. His parents read books and tried various approaches, but Lucas' outbursts had reached crisis proportions. These meltdowns would happen multiple times every day, and each one would last an alarmingly long time.
Thankfully for Lucas, his parents made a decision to get help...and that has made all the difference to him and his family.
Nar almost didn’t make it.
As a baby, Nar was sick—a lot. And when he was almost two, he nearly died.
Within 24 hours of arriving at Connecticut Children's, he was on a ventilator, his kidneys were failing and he was not responding to aggressive antibiotics. Teams from across the hospital came together, looking for a diagnosis and a treatment. Imagine the relief, and uncertainty, felt by Nar's parents when the immunology team finally found what they needed to make a diagnosis.