Holly Baltz6-week-old Mabel Rose Correal of Lake Worth Beach was born with a rare, complex heart condition, needs a transplant.
Mabel Rose is 6 weeks old, reaching that age in an uphill fight for her life.
Since she was born at a Royal Palm Beach birthing center, her parents, Hanna and Mateo Correal of Lake Worth Beach, have held her only five times. It takes a team of medical people to make that happen.
That’s because Mabel Rose was born with an extremely rare condition. She’s missing the lower left part of her heart, which pumps oxygenated blood throughout her body. A heart valve that normally closes shortly after birth is leaking. Added to that was a hole in her diaphragm that had left her kidney sitting on her lung, making it hard to breathe.
The survival rate of Mabel Rose’s condition is very low, 1% to 5%, a 2018 article in Seminars in Thoracic Surgery stated.
“She’s small but mighty,” Hanna, 24, said.
She’s even been known to bite as nurses care for her, Hanna said.
“She’s very feisty. She has a reputation in the cardiac unit,” she said in a Jan. 18 interview from Mabel Rose’s hospital room at Nicklaus Children’s Hospital in Miami, where Hanna and Mateo, 28, had lived since their baby arrived there hours after she was born Dec. 13. “Every nurse she’s had says she’s extremely strong.”
Mabel Rose was flown Saturday to be evaluated for a heart transplant at UF Shands Health Hospital in Gainesville. Though still critical, the baby’s condition has stabilized, Hanna said.
In Miami, Hanna and Mateo could only wait — and watch. Hanna was allowed to occasionally care for Mabel Rose. Sometimes she’d be allowed to help change her diaper. And Hanna is helpless when she sees her baby cry. Because of the tubes in her mouth, Mabel Rose can’t make a sound.
“There’s nothing I can do as a mom. I watch the nurses take care of her,” Hanna said. “I can’t console her like I should be able to.”
‘A beautiful pregnancy’
Hanna said she loved being pregnant with her first baby and delighted in Mabel Rose’s birth. Both seemed healthy with nothing amiss in prenatal ultrasounds.
“I was the obnoxious pregnant lady who couldn’t wait for more kids,” she said. “I had a beautiful pregnancy.”
On the day Mabel Rose came into the world at a Royal Palm Beach birthing center, labor was long — 36 hours — but peaceful.
“I enjoyed it,” Hanna said. “It wasn’t as painful as expected. It was like a rebirth for me. I was very calm. The whole time, my husband supported me.”
Hanna and Mateo’s first baby arrived smiling.
But Mabel Rose was blue. And they didn’t hear her cry.
The midwife wrapped the baby in a heating pad, put on an oxygen mask and placed her on Hanna’s chest. Mabel Rose started to turn pinker and was breathing, but when she latched on to breastfeed, her color changed to a purple hue.
That’s when the midwife called for Mabel Rose to go to the emergency room at HCA Florida Palms West Hospital, which has a Level III neonatal intensive care unit. As workers wheeled her out to go to Palms West, Hanna said, Mabel Rose was gray.
At Palms West, Hanna said she saw her baby paralyzed, strapped down, on a respirator as doctors worked on her.
“I remember a very kind nurse talking me through what I was seeing and assuring me she was OK and being cared for,” Hanna said. “I can’t remember a word she said, but I remember her face and kindness.”
It took only 30 minutes, Hanna said, to decide that the baby needed to go to Nicklaus Children’s Hospital in Miami, which has been cited nationally for top-notch pediatric and cardiac care.
“It was blurry, everything for the first two weeks,” Hanna said. “All of the overwhelming medical terms.”
One of the most complicated congenital conditions
Mabel Rose’s condition is called hypoplastic left heart syndrome, one of the most complex congenital defects in newborns, Nicklaus Children’s states on its website. She also has a leaky heart valve that would normally close shortly after birth. Combine that with the hole in her diaphragm, and doctors are dealing with a highly complex case. Mabel Rose is in critical condition.
A 1992 study published in CHEST Journal could find only nine cases ever reported in English medical literature. There’s no clear cause.
The heart condition can be detected in ultrasounds or an echocardiogram before birth. It’s not clear why it wasn’t in Mabel Rose’s case.
Normally children can be treated with three open-heart surgeries performed in the first three or four years of life. But Mabel Rose isn’t eligible for the first one because of the leaky heart valve, Hanna said.
Surgeons fixed the hole in her diaphragm the day after Christmas, though it might recur. In addition, Mabel Rose had too much blood flowing to her lungs through the pulmonary artery so doctors inserted a flow restrictor and a stent through her groin. The restrictor got twisted, so they had to go in again, Hanna said.
Heart failure medication, a ventilator that assists with breathing and other medications that battle long-term effects of intubation have stabilized her until a heart is available, Hanna said. She expects to wait about four months.
Coming close to the worst outcome
Hanna said, “We keep staying strong, keeping our faith in God,” but the first week was “really, really hard.”
The doctors didn’t want to give them false hope, but the situation was dire. Early on, doctors saw only two pulmonary veins where there needed to be four, Hanna said. And if they didn’t see all four on a dye test the next morning, they told Hanna and Mateo, “We would have to have a very hard conversation.”
Hanna and Matteo waited to see whether their baby could survive.
“We had a night when we had to talk about if we had to bury her, where we had to bury her. How we wouldn’t want her to suffer and would live our lives honoring her.”
The next morning, the test found all four veins.
Congenital heart walk planned
Hanna makes metal jewelry and was teaching at the Armory Art Center in West Palm Beach. She stopped working at 12 weeks of pregnancy to avoid being around metal and chemicals every day.
She said a debilitating car crash in 2017 led her to crafting as she healed. Mateo is an air-conditioning technician.
Mateo hasn’t worked since Mabel Rose was born.
“We’re not leaving her side,” Hanna said.
February is heart month. The Children’s Heart Foundation is sponsoring a congenital heart walk on Feb. 7 at Dreher Park South in West Palm Beach for research money. A group of “Mabel Rose’s Heart Heroes” is participating to raise money for research. Registration is free for the walk and $45 for the 5K.
Hanna has also started a GoFundMe page to help with medical expenses.
They’re grateful for everyone who has helped them, especially the health-care workers at Nicklaus Children’s.
“Every hand that has touched her to heal her has shown her so much love,” Hanna said.
In the meantime, Hanna and Mateo keep the faith.
“Her story is marked by God’s hand,” she said.
