How a comment from a stranger revealed that my son was possibly weeks away from death
Sarah Love was a little surprised when a stranger approached her and made an unusual comment about her newborn son’s skin color.
But it saved little Lincoln’s – revealing her son was in silent health and may have only weeks to live.
Mrs. Love was enjoying a family trip to SeaWorld in Florida with six-week-old Lincoln when a man approached them and made a comment about the boy’s “yellow” skin color.
Although she initially found the comment strange, the man put her at ease by explaining his background as a firefighter and EMT.
He said he didn’t think it was “anything scary or to worry about” but urged her to get it checked out.
A series of tests and blood tests revealed that Lincoln had biliary atresia, a childhood liver disease that blocks the bile ducts.
It caused his body to develop jaundice because it prevents bile from flowing from the liver and causes a buildup of bilirubin in the blood, which manifests as a yellow discoloration of the skin and eyes.
Sarah Love and her husband Micah were enjoying a day trip to SeaWorld in Florida in July when a stranger noticed their son had symptoms of a rare genetic disorder
Lincoln underwent two surgeries, which kept him in the hospital for more than a month, and the toddler was later diagnosed with a rare genetic condition known as Alagille syndrome.
The condition – which affects 1 in 12,000 babies born in the US – can lead to liver damage and cirrhosis, which is fatal if left untreated.
Without treatment, most children with biliary atresia die by the age of 19 months. In very rare cases, if serious complications occur, it can cause sudden death.
Lincoln underwent two surgeries, which left him at Nemours Children’s Hospital in Orlando for more than a month. The toddler was later diagnosed with a rare genetic condition known as Alagille syndrome, which causes scarring and damage to the liver.
The liver of a child with Alagille syndrome – which affects an estimated one in 70,000 newborns – has less smaller bile ducts than normal, causing bile accumulation.
Symptoms may include yellowing of the skin and whites of the eyes (jaundice), itching, dark urine, bumps under the skin’s surface and an enlarged spleen.
It can also affect the kidneys by possibly causing kidney failure, the heart due to narrowing of the blood vessel connecting the heart to the lungs (pulmonary stenosis), and the bones by sometimes showing abnormally shaped spinal bones.
[[Touching on the syndrome]]Ms. Love, 35, told the local news station WESH: ‘It can affect the kidneys. It can affect the heart.
‘It can affect the skeletal system, eyes and hearing. Many things we noticed could have been left untreated.’
Mrs. Love said he had had jaundice since Lincoln was born and there were some “other things” they noticed, but his first pediatrician noticed nothing.
Dr. Roberto Gomez, a pediatric gastroenterologist at Nemours who helped diagnose Lincoln, says that while Alagille syndrome is typically diagnosed shortly after birth, symptoms can occur at any age.
One study showed that the 20-year life expectancy of patients with Alagille syndrome is 75 percent.
Twenty-year life expectancy was higher (80 percent) for patients who did not require a liver transplant, and lower (60 percent) for patients who did require a liver transplant.
In addition to jaundice, other symptoms may include sunken eyes, poor weight gain, bone weakness, developmental delays, and itchy skin.
This is due to the reduced flow of bile from the liver and the knock-on effects this can cause.
Mrs. Love is now praising the stranger she met at SeaWorld for helping save her son’s life.
The Loves did not take the man’s name at the time and they launched an appeal via local news for him to come forward so they could meet and thank him.
The liver of a child with Alagille syndrome has fewer small bile ducts than normal, causing bile to build up, which in turn causes scarring and damage to the liver
Mrs Love, whose five older children were born healthy, says she is very grateful to the stranger she met and the wider medical team who helped Lincoln get his health back on track.
While Lincoln is now back home and in stable condition, Mrs. Love says there ‘cThere is a possibility that one day he will need a new liver.’
He will also need a nutritionist throughout his life to help treat vitamin deficiencies, as well as various medications.
One study found that the average age of children with Alagille syndrome at the time of transplant was seven years and 10 months.
Mrs Love, whose five older children were born healthy, says she is very grateful to the stranger she met and the wider medical team who helped Lincoln get his health back on track.
She said, “I definitely think it was Heavenly Father who put the right people in the right place at the right time.
“I think it was a lot of courage on his part. I’m sure there was some hesitation or insecurity on his part to say anything.”
Ms Love hopes her family’s story will help raise awareness of Alagille syndrome.