Mar 4, 2019, 9:57:07 AM CST Nov 28, 2023, 6:01:20 PM CST

London’s story: Dancing through life with half a heart

London in her cheerleading outfit London in her cheerleading outfit

As soon as Chelsey's obstetrician walked into the room when she was 18 weeks pregnant, she knew something was wrong.

"Your baby girl only has half a working heart," her doctor said.

He then told Chelsey they'd need to see a high-risk specialist in their hometown of Oklahoma City. That specialist felt they needed even more specialized care and referred them to the Heart Center at Children's Health℠.

The next day, Chelsey and her husband Trey drove 3.5 hours to Dallas. The Center, recognizing the stress of their situation, was able to move things around and perform a fetal ultrasound that afternoon. Chelsey recalls that being the first big sign that they were in the right place.

The second sign was when they met Matthew Stuart Lemler, M.D., Pediatric Cardiologist.

"I liked Dr. Lemler the minute I met him," Chelsey recalled. "I told him, ‘We need you to be our doctor.'

Over the next four months, they saw Dr. Lemler several times for their baby who had been diagnosed with tricuspid atresia, subaortic stenosis, a ventricular septal defect, and coarctation of the aorta. This unusual combination of conditions meant that the entire right side of their baby's heart did not work. It also meant they needed a surgical plan for their baby to be able to circulate blood from her heart to her body – through one ventricle rather than two. The plan involved three open heart surgeries, the riskiest of which needed to be done very soon after birth.

At 38 weeks pregnant, Chelsey was induced. After a long, difficult birth, baby "London" was born. Her team confirmed her diagnosis with a cardiac ultrasound and they started planning for London's first surgery, the Norwood procedure with a Blalock-Taussig (BT) shunt, which was performed seven days later.

Surgery number one: Long days with loving care

baby picture of LondonThe initial surgery was difficult. "London really struggled and had a lot of bleeding problems," Chelsey said. She and Trey spent 6 weeks bedside, waiting for little London to gain weight – her ticket out of the ICU.

During the long days in the hospital, they bonded with the team of nurses. Chelsey cultivated many friendships in the hospital, but nurse practitioner Kimberly Moore in particular "became like family."

Kimberly is one of the nurses on the Heart Center team who helped found the Children's Health Safe at Home program, a program that gives families access to 24/7 nursing support at home, between surgeries. Dr. Lemler said, "Kimberly was pivotal in the development of Safe at Home, which has helped decrease the mortality rate between a child's first surgery and their second one from 20% to less than 1%."

Chelsey and Trey leaned heavily on Kimberly during that first year. "We would not have survived that first year without Kimberly. She fought for London, took us in, and just loved her so much. We still send her pictures of London," Chelsey said.

From palliative care to surgery number two

Despite London's slow growth, her care team pushed for her to have her second procedure, called the Glenn procedure. But three weeks before it was scheduled, London got sick with a simple cold.

The cold turned into myocarditis, or inflammation of the heart wall.

As London's heart enlarged from the myocarditis, her heart function went down. So her doctors attempted to put her on the heart transplant list and ran tests to determine her chances of finding a good donor heart. Unfortunately, her test scores indicated it would be nearly impossible to find a good match.

Unable to turn to transplant, London's care team referred the family to palliative care, which offers extra support to children with difficult-to-treat conditions. She also started several medications to help her heart become stronger and decrease its workload.

The team and the family were losing hope. But then, after a few weeks, London improved dramatically.

"We couldn't believe that her pulse was good – and her feet were warm," said Chelsey.

London with her physicianThe doctors did an echocardiogram that showed that her heart, unexpectedly, was back to its normal function.

London's surgeon was nervous about the risk of performing a complicated Glenn surgery. But nurse Kimberly and Dr. Lemler pushed for London to have the surgery. They succeeded and London's surgery was scheduled for New Year's Eve 2014.

"This time, London rocked the surgery and left the hospital after just six days," said Chelsey.

"We really thought transplant was going to be her best option at that point. But it turned out that pushing for her to have Glenn surgery was the best thing for London," said Dr. Lemler.

Surgery number three: Out of the hospital in record time

Shortly after, the family moved to Dallas, anticipating the need for follow-up care and London's third surgery around age 4 or 5. In Dallas, they were ecstatic to start living a "normal life" with London and to welcome the birth of their second child, a boy.

Then, when London was 4, Trey took her to a routine cardiology appointment. Dr. Lemler thought London was doing so well that she could wait a year to have the Fontan procedure, her final surgery.

"But, a few months later, she started to get super winded playing outside," said Chelsey.

Again, Children's Health quickly adjusted the surgery timeline. And again, against the odds, this young fighter was out of the hospital in record time.

Doing everything she wants to do

At age 10, London is smart, kind and confident. Recently, she was awarded a "Golden Ticket" at school for helping a classmate with special needs. This natural empathy, combined with her inspiring health story and studious nature are what Chelsey believes will help London fulfill her dream – becoming a doctor.

Dr. Lemler couldn't be more pleased with how London is thriving. "We aim for every child to be like London – London is the dream that is becoming a reality for so many of our patients. She may well become a cardiologist because the quality of life for patients like her is improving every day. At Children's Health, we have so many resources available to help children with complex congenital heart disease maximize their potential," he said.

London posing for a picture while wearing a blue dressLondon doesn't let much stop her. She plays soccer, basketball and is on a dance team that practices three times a week, sometimes for three hours straight.

"It's unreal how we've gotten here. London can do everything she wants to do," raved Chelsey.

These days, London only needs to see Dr. Lemler for routine imaging tests.

"We just love how Dr. Lemler is always looking ahead and making recommendations based on how his older patients are doing," said Chelsey.

As she marvels at her daughter making friends everywhere she goes and helping care for her now two brothers, Chelsey has learned to stay focused on appreciating the little things.

"I used to fret a lot. And now I only worry about the worries when they come. I tell other families to ‘stay in their lane and stop Googling' because every single body is different. London's story certainly didn't end with any diagnosis or prognosis," said Chelsey.

Learn more

The nationally renowned team of pediatric cardiologists and subspecialists in the Heart Center at Children's Health treat the whole spectrum of heart problems, with a commitment to excellence. Learn more about our treatments and services.

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