OXFORD, Pa. - London Kelly was born at just three pounds with a rare condition that left her without ribs.
Her mother, a single parent, fought for her daughter to get the best medical care and now the soon-to-be one-year-old may get to finally head home.
Kristy Thompson is a single mom of three children who has found herself juggling normal day-to-day responsibilities with a minimum two-hour round trip from Oxford, Chester County for Philadelphia multiple times per week.
She's fighting for her baby to be in the best hands and for an opportunity to bring her home.
"I never thought I'd have a baby with special needs. That wasn't me, that wasn't written in my book. That didn't happen to me, and I never thought I was that strong enough to do that but I almost feel honored. Like I remember when I first had her I thought 'I am honored that I'm her mom,'" Thompson explained to FOX 29's Kelly Rule.
That badge of honor existed before Kristy knew exactly what London Skye Kelly's life would look like.
London, soon-to-be one, may soon have a chance to go home and be with her mother and siblings.
Blood and other invasive tests while pregnant showed a 20% chance London might be born with health issues.
"I figured I'll handle this, I'll be fine. Whatever comes my way, I got this," Thompson added.
Then a personal health scare turned into an emergency delivery two months early. London was born at just three pounds.
"I was very taken back by how stressed out she looked, and I didn't understand what was going on," Thompson said.
She was transferred from Chester County to A.I. DuPont Hospital for Children.
There, London was diagnosed with Cerebrocostomandibular Syndrome, known as CCMS.
London has a small head and jaw, and as an x-ray from her birth shoes, she does not have a rib cage.
Her doctor tells FOX 29 there have only been about 80 or 90 cases described ever in medical literature and only three of those cases were similar to London. In those three cases, the patients died shortly after birth.
X-rays taken after London was born show she had no rib cage.
"We're not quite sure what the ribs are made of, it's either cartilage that's really soft or some form of connective tissue," explained Dr. Sam Alexiou, a Pediatric Pulmonologist at the Children's Hospital of Philadelphia. "Just when you think you've seen it all, there's a patient that comes around and really tests the knowledge of medicine and your understanding of physiology."
Thompson says for six months London had numerous setbacks, including several bouts of pneumonia.
In between long days and nights at the hospital, she did her research and requested London be moved to the Children's Hospital of Philadelphia in December, as a last resort.
"Go with your gut as a mom," Kristy said. "They said, 'look she could die,' but I had to take the chance."
Kristy's gut was right and London started to improve.
Dr. Alexiou was among a team of specialists constantly keeping the wheels turning.
"Patients like London push medicine to its limits and really sort of allow us to see firsthand how much we can do," Dr. Alexiou said.
It was enough for Kristy to set a goal to bring London home, no matter the cost, equipment, or learning curve.
"Dr. Kumar at CHOP told me, 'You and I are going to help this baby as much as we can and until we're hurting her and not helping her, we will not stop.' that validated in my head I was doing the right things," Thompson said. "I want her to smell food, I want her to look outside and see the sun, I want to take her for a walk. I'm going to be scared to do that but I want her to be able to do that."
London has a trach tube, a feeding tube, and needs to be on a ventilator at all times.
Thompson and her mom jumped into extensive training to be her caretakers and pulled together enough cash for the right car.
London was diagnosed with Cerebrocostomandibular Syndrome after transferring to A.I. DuPont Hospital for Children.
They also started the daunting search for home healthcare nurses, which can be difficult to find in rural Oxford – especially during a pandemic.
She does all of this, all while still being a mom.
Charlie, one of Thompson's other children, now has dolls that look a little more like her sister.
"Something, somewhere, thinks or knows I can do this and I think this is going to be hard, but a lot of times as soon as I start to think negative I turn it right around," Thompson said.
She hopes parents realize they are stronger than they know, and that they can trust their gut and know when to fight for their child's health.
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