A week ago Friday, Carole Tencza heard her baby wail for only the second time.
“As much as I hated watching her cry, it was the best sound I ever heard in my life,” said Tencza, 35, of Glen Lyon, whose 8-month-old daughter, Aaliyah, faces a multitude of medical issues, including some that affect her ability to be vocal.
The first inkling of challenges ahead came last November.
Five months into her pregnancy, Tencza underwent what she believed would be a routine ultrasound to reveal whether she was carrying a boy or girl.
When the technician left the room and didn’t return for about 20 minutes, Tencza, already a mother of three, started to worry.
Then a doctor and social worker came in to talk to her, and her anxiety increased. Something must be wrong, she thought.
They told her it appeared her baby had a club foot on the right side. That was upsetting, but when Tencza realized it wasn’t a life-threatening condition, she felt better.
However, the club foot was one of many concerns, Tencza said as she held Aaliyah on her lap during a recent interview at her home.
The little girl’s challenges range from an abnormally small jaw to the absence of a femur, or thigh bone, in her right leg, where her shin appears to come out of her hip.
During her short life, Aaliyah already has had four surgeries, the first being a tracheotomy when she was just hours old. Because her stomach is extremely small, she’s nourished through a feeding tube that enters her intestines through her abdomen.
At this point, she can’t sit up unless someone holds her, and she needs the tracheotomy tube to help her breathe.
But she smiles a lot.
“She’s feisty,” Tencza said. “She’s a soldier.”
A shared journey
She’s also a “miracle baby,” said Tencza, who keeps Facebook friends updated on her daughter’s progress through a page devoted to “Team Aaliyah.”
“Well, Miss Aaliyah has moved to her next goal,” Tencza posted last week. “She has mastered grabbing and reaching for things she wants! She also has this bell she can hit against things like she is playing the drums. We are so proud of her.”
Friends have posted their approval.
“Yay! Go, Aaliyah! LaDonna Morgan wrote. “Keep it up, girlie!”
“Such a beautiful miracle,” wrote Sheena Lloyd. “Many prayers, many blessings.”
The next goal is to encourage Aaliyah to sit and roll over, said Tencza, who gave up her job at Sallie Mae in Hanover Township to stay home with the baby. Her household also includes daughters Krystyna, 16, and Vyktorya, 11, and son Izayah, 2. Aaliyah’s father, David, “doesn’t live here,” Tencza said simply.
The rocky road
As she smoothed the baby’s little pink skirt — Aaliyah was dressed up for company — Tencza’s eyes filled with tears. She talked about a bleaker time, when it seemed medical personnel had nothing but bad news for her.
That ultrasound in early November was only the first of many tests. A subsequent ultrasound at Geisinger Medical Center in Danville revealed the baby had a cleft lip and cleft palate, that her jaw was extremely tiny and “they couldn’t see a right leg.”
“I felt like I couldn’t breathe,” Tencza said. “The tears were just running down my face.”
The expectant mom was referred to Children’s Hospital of Philadelphia, where multiple tests, from ultrasounds to MRI and EKG were performed.
Tencza remembers Dec. 10 as “one of the worst days of my life. “The things they told us were so horrible, with no hope. They said that my baby had a cleft lip and cleft palate and micrognathia, which means her jaw is so severely small that it didn’t even look like she had one.”
Aaliyah also has microgastria, which means her stomach is extremely small, and the prenatal tests revealed anomalies in the bones on her right side and in her spine.
“They told me there was only a 5 percent chance of surviving the birth,” Tencza said. “But how do you prepare to lose a child?”
At subsequent appointments, medical personnel tried to prepare Tencza for the likelihood the baby would not survive the birth process at all. They talked about “comfort care,” explaining they could deliver the baby, clean her up and let Tencza hold her for however long she would live. It would probably not be long, they said.
During her Feb. 7 appointment in Danville, when she was 33 weeks pregnant, Tencza said, a nurse reported her blood pressure was extremely high, 210 over 190.
“I asked her, wouldn’t your blood pressure be high if you were told your baby wasn’t going to live?” Tencza said.
It turned out Tencza had preeclampsia and would need an emergency Caesarean section.
She remembers a doctor asking “how far I wanted him to go to save (the baby.) I said, ‘Save her, but don’t hurt her. I don’t want her hurt in any way.’ “
Tencza’s sister Joni, daughter Krystyna and best friend gathered at the medical center to be with her.
A magnesium infusion didn’t bring down Tencza’s blood pressure, she said, so the C-section took place and Aaliyah Destiny Hope was born at 9:04 p.m.
The baby, who weighed only 3 pounds, 9 ounces, gave a frail cry.
“It was faint, but I did hear it,” Tencza said.
Then she didn’t see the baby for hours — and because of the trach tube, she wouldn’t hear her baby’s voice again until October.
The light on the horizon
Ironically, Lisa Cerullo — one of several nurses who provide nearly round-the-clock care to the baby at home — heard Aaliyah cry a few weeks ago when the little girl managed to pull out her trach tube, but it only lasted an instant, and Tencza hadn’t been in the room to hear her.
From now on, Tencza said, she expects she will be able to hear the baby’s voice more regularly because she and the nurses will periodically attach a speech valve to the tracheotomy tube. An adult with a tracheotomy would use that equipment to speak; in Aaliyah’s case, the main purpose is to get the baby used to swallowing. It also will give her a chance to exercise her vocal cords — and that will be music to Tencza’s ears.
There may be many difficulties ahead for Aaliyah, who spent her first 11 weeks in the neonatal unit at Geisinger Medical Center and whose every outing is accompanied by a “go bag” that contains extra trach tubes, a stethoscope, a nebulizer and other medical supplies.
During a recent appointment, Tencza said, she learned her daughter eventually will need a hip replacement. That was the latest bit of medical news. But Tencza refuses to be discouraged.
“If she can walk, that will be wonderful. But if I have to carry her the rest of my life, I’ll do what I have to do. They told me she wouldn’t be here, but she is. She’s in God’s hands.
“Who knows,” Tencza added. “Maybe in 10 years she’ll be in the Olympics.”