Mom credits stranger's comment with helping to save her son's life
A trip to a theme park for a Florida family turned into a lifesaving moment when a stranger commented on the appearance of the family's newborn baby.
In July, Sarah Love and her husband Micah were visiting a theme park near their home in Lake Alfred, Florida, their first family outing with all six of their children, including their then-6-week-old son, Lincoln.
Love, 35, said at one point, she noticed a man she did not know at the park looking at Lincoln, but didn't think much of it.
When she walked by the man again later in the day, she said he stopped her to talk.
"He introduced himself and mentioned that he was a first responder," Love told "Good Morning America." "He said he noticed Lincoln and how very jaundiced he was, and he didn't want to scare us ... but he just thought it might be a good idea for Lincoln to get some medical attention."
Love said the stranger identified himself as a firefighter in a nearby county, but she did not get his name.
Instead of feeling scared by what the man told her about Lincoln, Love said she felt "reassured," both because he was so calm and because his comment confirmed symptoms she had noticed herself.
"Ever since [Lincoln] was born, he's been jaundiced. At his baby well visit, his pediatrician didn't seem concerned at all," Love said, adding, "She gave us counsel to stick him in the sunlight, hopefully, and it would clear up, and there were some other things with him that we noticed."
After speaking with the first responder, Love said she called the pediatrician, whose office recommended she take Lincoln to a local hospital for bloodwork.
Shortly after arriving at the hospital, Love said Lincoln was put on IV fluids and examined by doctors, who then recommended that he be transferred to a specialty hospital, Nemours Children's Hospital in Orlando.
Lincoln was subsequently admitted to Nemours, where he underwent additional testing, a liver biopsy and faced several misdiagnoses before receiving a life-changing diagnosis.
"It felt like the carpet had been ripped up from underneath us," Love said of the experience, noting that her five older children were all born healthy. "There were some very intense feelings going through all of this, very scared, very unsure. I was very grateful for the wonderful doctors that we had, but I don't think there's anything you can say to try and comfort a parent in that situation."
On July 30, nearly four weeks after the stranger stopped them at the theme park, the Loves learned that Lincoln has Alagille syndrome, a genetic disorder that mainly affects the liver and the heart, according to MedlinePlus, an online information service produced by the National Library of Medicine.
According to MedlinePlus, one of the main symptoms of the disorder is a "yellowish tinge" to the skin due to liver damage caused by abnormalities in the bile ducts.
Physical signs of Alagille syndrome also include difficulty gaining weight, deep-set eyes and a small, pointed chin, according to the website.
Love said she had noticed those characteristics in Lincoln since birth, but had not thought they could be signs of something much more serious until she was nudged by the stranger at the theme park.
"It was that extra added bit of encouragement that we needed," she said, adding that she's learned from the experience that there are "no silly questions when it comes to your baby's health."
Dr. Roberto Gomez, a pediatric gastroenterologist at Nemours who helped diagnose Lincoln, said Alagille syndrome is typically diagnosed very early after birth, though symptoms may start to appear at any age. Other symptoms may also include vision problems, bone weakness, developmental delays, and high risk of uncontrolled bleeding.
In Lincoln's case, Gomez said the medical team had to rule out several other conditions first after Lincoln arrived at the hospital around 6 weeks of age.
"The first week [he was at Nemours], we didn't know he had Alagille at all," Gomez told "GMA." "We just knew we were in a rush to diagnose him."
Alagille syndrome affects less than 50,000 people in the United States, according to the Genetic and Rare Diseases Information Center at the National Institutes of Health. It is a chronic, lifelong condition that is treated with medications and, in more serious cases, a liver transplant.
In Lincoln's case, Gomez said he will need to be under the care of a nutritionist throughout life to help treat vitamin deficiencies, as well as on various medications. Alagille syndrome often becomes a quality of life issue for people it affects because it causes itching all over the body that does not always respond to treatments, according to Gomez, who noted Lincoln is lucky to have an "incredible family" behind him.
"He has a great support. That helps a lot," Gomez said. "They have worked as a team with us."
Love said she wants to share her family's story to raise awareness about Alagille syndrome and to hopefully reach the firefighter who stopped her about Lincoln, leading to his lifesaving diagnosis.
"I don't think there are enough words that can honestly describe how thankful our family is. Thank you from the bottom of my heart," Love said of her message to the stranger. "It was a tough thing to go through, but because of that one small thing that he did, look at how much of an impact he had on Lincoln, on our family. I just want to say thank you."
