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Moanalua’s Leila-Rose Coloma Named Hawaiʻi’s 2024 Children’s Miracle Network Champion

Published March 12, 2024

Young patient holding large Children's Miracle Network logo cutout alongside her cardiologist.

She spent her first months of life in intensive care units and underwent open-heart surgery before she turned 1. Now 7 years old, Leila-Rose Coloma is definitely a survivor, and today, it was revealed that the little girl from Moanalua is the 2024 Children’s Miracle Network Hospitals (CMN Hospitals) Champion for Kapiʻolani Medical Center for Women & Children.

Leila and her family were greeted by cheers from supporters attending the annual CMN Partners event at The Royal Hawaiian Resort Waikiki. She will share her courageous story throughout the year, inspiring countless CMN Hospitals community partners and supporters committed to the health and well-being of Hawaiʻi’s keiki.

Her story began in 2017, when Kayley Coloma was nine months pregnant. Everything had been normal, until doctors heard her baby’s heart racing. Kapiʻolani’s team performed an emergency C-section and brought Leila into the world.

The little girl had a challenging path ahead. Leila had Ebstein’s anomaly, a rare defect of the heart valves that made it difficult for oxygenated blood to circulate in the body. In addition, Wolff-Parkinson-White syndrome left her heart beating so rapidly that it could not effectively pump blood to all her organs. Even with a breathing tube, the infant was not receiving enough oxygen.

“It was clear she needed complex heart surgery,” said Dr. Andras Bratincsak, Leila’s cardiologist who is now director of Kapiʻolani’s Pediatric Heart Center. “But first, we needed to stabilize her heart rate.”

Then, at 5 months old, she had open-heart surgery.

“It was the longest day of my life,” mom Kayley said.

The intricate surgery was successful. However, as Leila grew into an active toddler, her parents noticed that she would breathe heavily after running and playing. Sometimes, her lips would turn a bluish color. Her heart valve that had been repaired was not functioning well. At 3 years old, Leila had her second open-heart surgery.

“It was still very stressful, but our Kapiʻolani doctors, nurses and staff constantly asked if we needed anything, made sure we understood what was happening and reassured us all along the way,” Kayley said. “We have been to other hospitals, and it is not like that everywhere. Kapiʻolani is special.”

“We have been to other hospitals, and it is not like that everywhere. Kapiʻolani is special.”

Kayley Coloma
Leila-Rose Coloma happily holding hands with mom and dad

Leila is now a first grader who loves to dance, play basketball and spend time with her 2-year-old brother, Liam.

Leila’s 2024 Champion announcement included several surprises, including a trip to California for the family, where they will visit Disneyland and represent Kapiʻolani at a CMN Hospitals event. Kapiʻolani CMN partners are excited to welcome the Colomas to their stores.

“Our amazing CMN Champions are our inspirations,” said Wendel Dait, frontend coach at the Hilo Walmart. “They give us the motivation to give to help the children at Kapiʻolani. Seeing their smiles and seeing how we impact their lives are the reasons why we fundraise to help change the future.”

View transcript
[Music]
Leila is super kind she's very sweet
0:16
and loving she's really smart she's outgoing she's just one of a
kind my pregnancy with was really normal no issues all appointments were always really well and I just had noticed that
she wasn't moving I was ambulance capani I was told you're going to have an emergency c-section I try not to remember
it supposed to be like the happiest day of your life but it stressful it's
stressful Lea's heart was pumping so fast it wasn't able to get the oxygen where it needed to go we ended up having
to put a breathing tube in and hooking her up to a ventilator and despite giving her the maximum amount of oxygen she still wasn't able to keep her oxygen
level up and she basically just said she doesn't want to sugarcoat it and she just said she's really sick and I think
it's then all the emotions came out and I I just remember crying and crying it
was really rough to see her like that all the wires all the IVs it's really hard when it's those hard days and very sick babies and you just
don't know what tomorrow will be like and it's you at the bedside every day with them trying to not just take care
of the baby but taking care of the family too Leila was diagnosed with a heart threedom abnormality called
abstein anomaly so it was clear that she needed heart surgery we always knew
surgery was was coming and there was way more to her care it was just
[Music]
when at 4 months they decided that it's time for her to have her first open heart surgery we needed to be
transported by the Kapiʻolani transport team the transport team was amazing then at Rady's
Children's Hospital in San Diego she underwent a surgery which was taken care of the heart RM problem surgery went
really well she didn't need a heart monitor she didn't need any heart rate control medication which she's had been
on her whole life it was just letting her be a kid letting her do anything
that she could seeing what her limits were which at that point there were none so at 3 years old it was decided
Leala needed another open heart surgery uh luckily at Kapiʻolani and being able to stay home and have everyone
there you can't ask for anything more so our plan to build a pediatric heart
center rewards these families Leila can benefit from a cardiac catheterization laboratory and an entire pediatric Heart
Center to have all of her Diagnostic and Interventional procedures kept here in Hawaiʻi and so those are some of the
things that people in Hawaiʻi are able to do through our Children's Miracle Network Funding and that's such a huge support so that families don't have to
go to the mainland every single time that there is something that they need she has had two open heart surgeries and to look at her now so
smart and so bright and she's what drives us all to keep doing the work that we do today it's people like Maddie
and Joan and Dr B that make us feel like family I have two kids on my own but I
always say that these are my kids too we really appreciate every single amount that you give for Children's
Miracle Network because it stays here in Hawaiʻi 100% of all of the proceeds stay here for children just like Leila
Rose just thinking back to when she was born and not
knowing what her life would be like if she would be able to be so normal if she would be able to
run nothing holds her back now and it just it makes me really
[Music]
happy hi I'm Lea Rose thanks for helping kids like
[Music]
me

Leila-Rose Coloma is definitely a survivor. Leila was born with a rare heart valve defect called Ebstein’s anomaly that affected her blood circulation. In addition, Wolff-Parkinson-White syndrome made her heart beat too quickly to effectively pump blood. Her little body wasn’t receiving the oxygen she needed.

Leila spent months in the intensive care units at Kapiʻolani Medical Center for Women & Children. At 5 months old, she needed open-heart surgery. Leila recovered. But a few years later, she underwent her second open-heart surgery at the age of 3. Watch this video to learn more about Leila’s journey and to learn how she's doing today.

Champion Pin Represents Leila’s Journey

CMN Hospitals partners also were the first ones to receive Leila’s Champion pin. The unique design represents her journey:

  • The heart represents her heart conditions. The red and blue are the colors for congenital heart defects.
  • The hand represents everyone who has cared for her through her medical journey.
  • Pink is her favorite color. The pink rose represents love and kindness, which are qualities used to describe both Leila and the staff at Kapiʻolani.
  • The pin also includes Leila’s answer for her second-favorite color: “rainbow.”
Illustration of a celebratory pin with rose, heart and rainbow.

Community Partnerships Support Programs at Kapiʻolani

As a not-for-profit medical center, Kapiʻolani relies on community support to further its mission of caring for Hawaiʻi’s families and creating a healthier Hawaiʻi. Kapiʻolani is committed to providing advanced quality care to all patients, regardless of their ability to pay.

In Hawaiʻi, CMN Hospitals funds help support key programs and services at Kapiʻolani that helped Leila and many other keiki, including the Child Life program, critical care transport team and lifesaving equipment. Gifts made in Hawaiʻi stay in Hawaiʻi, with 100% of the funds going to help local keiki.

Local fundraising partners Costco Wholesale, Panda Express, Walmart and Sam’s Club, Ace Hardware, UHA Health Insurance, Marriott International and Marriott Vacations Worldwide, various Hawaiʻi credit unions, KSSK with iHeartMedia, D. Suehiro Electric, Inc. and more helped raise more than $3 million for Kapiʻolani CMN last year. Kapiʻolani has had a partnership with CMN Hospitals for nearly 40 years.

Your Support Makes a Difference Donate Today
Media Contact Liz Chun Uyehara

[email protected]

808-535-7675

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