Thanks to a first-ever treatment, Coralynn is soaking in life—riding her hound dog Zena around the living room and picking flowers on her daily walks with her parents, Natasha and Steven. The toddler enjoys trips to the ocean, bird-watching, and running through the sprinkler in the backyard.
In her early days of life, Coralynn developed neonatal lupus, a rare newborn autoimmune disease. Neonatal lupus is not the same as lupus that affects adults. However, when a woman with lupus, such as Natasha, gets pregnant, her autoantibodies can pass through the placenta to her developing baby. In 2 percent of infants it can cause heart issues.
Doctors treated Natasha’s lupus during pregnancy, but they didn’t recognize lupus in Coralynn immediately because she wasn’t showing the typical signs—a skin rash or heart problems. Instead, Coralynn’s neonatal lupus took an extremely rare turn and attacked her liver.
“As a liver doctor, it can take a whole career to see liver failure due to neonatal lupus, and I saw it in my first week at Stanford Medicine Children’s,” says Noelle Ebel, MD.
Luckily, the family lives just five miles from Lucile Packard Children’s Hospital Stanford, because they were in and out of the hospital for diagnostic testing during Coralynn’s first few weeks of life.
“After delivery, a nurse recognized something was wrong,” Natasha says. “To us, she seemed normal. She was breastfeeding and didn’t show any outward signs.”
On day 18, she went into acute liver failure. That was when doctors came together across specialty lines and acted fast to save Coralynn’s life.
“Our only goal was to rescue Coralynn’s liver quickly. We definitely had to think outside the box to make this work, and we all celebrated when we saw that our novel treatment was helping,” says Dr. Ebel.
A spirit of cooperation drives care and research at Packard Children’s. In this spirit, doctors worked across specialty lines and kept Coralynn from needing a liver transplant. The novel treatment demanded input from liver specialists and rheumatologists—two types of doctors whose paths usually don’t cross. The successful approach was created by melding treatments used in both specialties—an exchange blood transfusion to remove harmful antibodies, intravenous immunoglobulin to boost the immune system, and steroids to reverse liver failure.
“Within the first 24 hours we saw her liver levels improve, so we knew it was working. By six months, there were no more antibodies in her system,” says Steven. “We breathed a nice sigh of relief knowing there was no permanent damage to her liver.”
The doctors are working to publish Coralynn’s case with the hope that it will save the lives of other newborns by making doctors across the globe aware of their successful protocol. In 2002, the Research Registry for Neonatal Lupus reported just 19 cases of neonatal lupus with acute liver disease, with six of those babies dying due to complications. Because it’s so rare, there’s no standard of care for treating newborns with neonatal lupus who develop acute liver failure. This novel treatment just might change that.
“We had a team of doctors caring for Coralynn. Dr. Ebel was especially wonderful,” says Natasha. “She was the calm in our storm of emotion and stress.”
Today, Coralynn is nearly 16 months old. Her parents greet her every morning singing the tune, “You Are My Sunshine.” She’s teaching the dogs, Sarge and Zena, to share the tennis ball when they fetch and breaking out in hearty chuckles at their antics.
“We couldn’t imagine life without her—we love her so much,” Steven says. “We are so grateful to her Stanford doctors, and so fortunate to have this level of care right here in our own city.”
Read more about Coralynn’s story featured in the Washington Post. How a collaborative medical effort saved a baby’s liver and her life >
Learn more: http://gastroenterology.stanfordchildrens.org
