How a remark from a stranger revealed my son was probably weeks away from dying
Sarah Love was a little taken aback when a stranger approached her and made an unusual comment about her newborn son’s skin color.
But it saved little Lincoln’s life – revealing her boy had a silent health condition and potentially just weeks left to live.
Mrs Love was enjoying a family trip to SeaWorld in Florida with six-week-old Lincoln when a man approached them and remarked on the boy’s ‘yellow’ complexion.
While she initially thought the comment was odd, the man put her at ease explaining his background as a firefighter and EMT.
He said that he didn’t think it was ‘anything scary or to be worried about,’ but urged her to get him checked.
A series of tests and blood work revealed that Lincoln had biliary atresia, a childhood liver disease that blocks the bile ducts from flowing out of the liver.
This caused a buildup of bilirubin in the blood, which manifests as a yellowing of the skin and eyes.
Sarah Love and her husband Micah were enjoying a day trip to SeaWorld in Florida this July, when a stranger spotted their baby son had symptoms of a rare genetic condition
Lincoln underwent two surgeries, which saw him stay in hospital for more than a month and the tot was later diagnosed with a rare genetic condition known as Alagille syndrome
The condition – which occurs in 1 in 12,000 babies born in the US – can lead to liver damage and cirrhosis of the liver, which is deadly if not treated.
Without treatment most children with biliary atresia die by the age of 19 months. In very rare cases, if there are severe complications, it can cause sudden death.
Lincoln underwent two surgeries, which saw him stay at Nemours Children’s Hospital in Orlando for more than a month and the tot was later diagnosed with a rare genetic condition known as Alagille syndrome, which scars and damages the liver.
The liver of a child with Alagille syndrome – which is estimated to affect one in 70,000 newborns – has fewer small bile ducts than normal, causing bile to build-up.
Symptoms can include yellowing of the skin and whites of the eyes (jaundice), itching, dark urine, bumps under the skin’s surface, and an enlarged spleen.
In can also impact the kidneys by causing potential kidney failure, the heart due to narrowing of the blood vessel connecting the heart to the lungs (pulmonary stenosis), and the bones by sometimes presenting with abnormally shaped spinal bones.
[[Touching on the syndrome]] Mrs Love, 35, told local news station WESH: ‘It can affect the kidneys. It can affect the heart.
‘It can affect the skeletal system, the eyes, hearing. A lot of things we were noticing could have gone untreated.’
Mrs Love said since Lincoln was born he had been jaundiced and there were some ‘other things’ that they noticed but his initial pediatrician didn’t pick up on anything.
Dr Roberto Gomez, a pediatric gastroenterologist at Nemours who helped diagnose Lincoln, says although Alagille syndrome is typically diagnosed soon after birth, symptoms can appear at any age.
One study demonstrated that the 20-year life expectancy of patients with Alagille syndrome is 75 percent.
The 20-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.
Along with jaundice, other symptoms can include deep-set eyes, poor weight gain, bone weakness, developmental delays, and itchy skin.
This is due to the reduced flow of bile out of the liver and the knock-on effects this can cause.
Mrs Love now praises the stranger she met at SeaWorld for helping to save her son’s life.
The Loves did not take the name of the man at the time, and they have launched an appeal via local news for him to step forward so they can 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, scars and damages the liver
Mrs Love, whose five older children were born healthy, says she is very grateful to the stranger she met and to the wider medical team who have helped Lincoln get his health back on track
While Lincoln is now back home and in a stable condition, Mrs Love says there ‘comes a possibility that one day he will be in need of a new liver.’
He will also require a nutritionist throughout life to help treat vitamin deficiencies, as well as various medications.
One study found that the mean age of children with Alagille syndrome at the time of transplantation was seven years and ten months.
Mrs Love, whose five older children were born healthy, says she is very grateful to the stranger she met and to the wider medical team who have helped Lincoln get his health back on track.
She said: ‘I absolutely think it was our heavenly father putting 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 unsure feelings on his part that he should speak up.’
Mrs Love hopes that her family’s story will help raise awareness about Alagille syndrome.
