Family of two-year-old Altoona girl born premature on Christmas Day 2011 finds happy ending
Two-year-old Caley Halerz is a fighter.
Inside the Altoona home of her parents, Denielle and Mark, Caley – a sprite with a sweet smile who recently learned to walk – is sure footed.
She worked her way around her family’s living room on a winter morning last week, stopping to hug a stuffed animal or play on a hand-held computer tablet used in her early intervention therapy session taking place with Home Nursing Agency child development specialist Karen Anderko.
“You know the whole Shakespearean quote, ‘Though she be but little, she is fierce’?,” Denielle said at one point. “That’s this one.”
The active toddler – who has an older brother, Ty, 4 – has come a long way from Christmas Day 2011, when she was born at just over 24 weeks, weighing a mere one pound, two ounces.
Caley, who Denielle says was considered a micro-preemie, was so tiny her father’s wedding band slipped on her arm with room to spare. Her skin was transparent and her veins struggled to hold an IV. Her ears had not yet formed and her eyes were fused shut.
Before the birth, Denielle was suffering from HELLP syndrome, “a life-threatening pregnancy complication usually considered to be a variant of preeclampsia,” according to the Preeclampsia Foundation’s website.
HELLP is a pregnancy-specific condition with symptoms of high blood pressure, liver malfunction and a dramatic drop in platelets, which the body uses to clot blood, said Dr. Lauren Johnson, associate neonatologist at Geisinger Janet Weis Children’s Hospital, Danville. She treated Caley.
The condition “typically comes on much more rapidly, it’s sort of like you’re well one minute and all of a sudden it just, the bottom falls out from under you. And it’s a condition that, for the most part as soon as the obstetricians have diagnosed it, you need to move towards delivery. So it threatens both the life of mother and therefore the unborn child,” Johnson said.
Like preeclampsia, no one knows what causes HELLP, she said.
Before Denielle was taken to Geisinger Health System she talked about her final wishes with her husband, who was strong and optimistic during the ordeal, she said.
“I always say, ‘he willed us into everything being absolutely perfect,'” she said.
In the days between the diagnosis and the birth Denielle received two steroid shots.
“They primarily improve a pre-term infants’ lungs, but they actually dramatically decrease pretty much all the bad things that can happen when you’re born prematurely, and what is atypical here is that there actually was enough time for Denielle to have gotten her two shots and so she actually held off, and that, I think, obviously helped Caley remarkably,” Johnson said.
Denielle was discharged on Dec. 29. Caley, who remarkably was born breathing on her own, was only on a ventilator for three to four weeks of the 96 days she spent in the Neonatal Intensive Care Unit, Denielle said.
The chances of a baby born at 24 weeks surviving are about 50 percent, and the majority of survivors face some significant long-term issues, Johnson said, noting the most concern goes to how the brain is affected.
“And what’s interesting with Caley is as a 24-weeker, yeah, there were complications that she had but there actually were more that she didn’t have,” she said. “So she had your typical premature baby lung disease but her actual lungs were never all that bad, and as a 24-weeker she actually didn’t go home on oxygen, which the overwhelming majority do.”
The road wasn’t all smooth, though.
What Caley endured included numerous blood transfusions, which happen with premature babies; contracting an infection at 12 days old, and suffering from apnea of prematurity, meaning she would regularly stop breathing, earning her the affectionate nickname of “Drama Queen,” Johnson and Denielle said.
She also had laser surgery on her eyes to stop retinopathy of prematurity, an eye disorder that can lead to blindness, Johnson said. She will probably have to wear glasses for the rest of her life, but is able to have corrective surgery later on, Denielle said.
“Caley did not have an issue with bleeding in her brain and again at 24 weeks that’s pretty dramatically impressive because most babies of that age don’t escape without some bleeding up there,” Johnson said.
Touching Caley wasn’t possible at first, but eventually they practiced what is known as “kangaroo care,” allowing for skin to skin contact between parent and child.
“I feel like kangaroo care was the most effective form of care I could give Caley,” Denielle said. “The closeness started to mend my broken heart just by being able to hold her close and feel her heartbeat against mine, and the benefits it gave Cal were incredible. She would smile and lift her head just to look in my eyes.”
The bonding moment can also help regulate the infant’s temperature, because if the baby has a fever the parent’s body will naturally pull heat, or give off heat if the baby is cold, Mark said.
On Feb. 27, Caley breathed on her own without oxygen assistance, and about a month later she went home, weighing 3 pounds, 14 ounces, with just a monitor for her apnea, a precaution Mark said was for their peace of mind.
Since May 2012, Caley has received developmental therapy, and is hitting milestones, Denielle said.
She is currently working on using words and playing independently of Denielle, Anderko said. They follow an “individual family service” plan, following what the family sets as goals.
Family and friends were an “amazing support system,” throughout the ordeal, Denielle said.
Applebee’s Neighborhood Grill and Bar where Denielle is an assistant manager, and Biddle Real Estate, where Mark is a project manager were also supportive, she said.
Denielle struggled with self blame and sometimes still does, she said.
“I know HELLP is not something I could have controlled, [but] I can’t help but feel like it was my duty to keep her safe, and for a very long time I felt like I failed her,” she said. “With every spinal tap, blood transfusion, and alarm that went off with her I couldn’t help to feel like my body failed her, that I should have protected her.”
Johnson said all mothers with a baby in the NICU carry that guilt.
“We actually try to spend a lot of time counseling moms so that rationally they know that they’re not responsible for their child being in the NICU, but there’s no mother in here who doesn’t feel guilty because her child is here because in some way, shape or form their body, they believe, failed them,” she said. “Of course, she had no control over this and she’s not responsible for it but there’s nothing you do that will ever, ever take away that sense of guilt that they have.”
Ultimately, the parents are responsible for how a child such as Caley turns out, Johnson said.
Denielle wanted to tell her family’s story to offer hope to others who might find themselves in a similar situation.
“I wanted others to know the true meaning of this Christmas Miracle,” she said. “So often there are so many sad endings, and this story is as uplifting as you can get.”
Mirror Staff Writer Amanda Gabeletto is at 949-7030.