Dad Went to Bed with a Cough and Died of a Cardiac Arrest. 6 Years Later, the Same Happened to His Son

A mother in Kent, England, is speaking out about a little-known genetic condition after losing both her husband and her son — deaths that unfolded in eerily similar ways, six years apart.

Amber Selvey says her family had no known history of Alagille Syndrome until genetic testing revealed it after devastating loss. Alagille Syndrome is a genetic condition that can affect multiple organs and may lead to liver damage and vitamin deficiencies, according to the Cleveland Clinic.

Amber’s husband, Jason Selvey, died in 2017 at age 47. Years later, their son Daniel died in 2023, just days before his 25th birthday. Amber says Daniel went to bed with what seemed like an ordinary cough and cold — just as his father had — before suffering heart failure.

“Alagille syndrome can be very difficult to recognize because symptoms vary widely and often appear in isolation rather than as one clear condition,” Amber, 51, said. She explained that liver involvement is common, but it can range from mild abnormalities found only on blood tests to severe disease requiring transplantation.

She added that heart problems are also frequently seen, including narrowing of blood flow from the heart to the lungs (pulmonary stenosis), heart murmurs, and complex defects such as tetralogy of Fallot. In Daniel’s case, Amber said, he had aortic valve stenosis and a bicuspid aortic valve — later found at post-mortem to be an extremely rare unicuspid valve. When cardiac symptoms appear without obvious liver disease, she warned, the underlying genetic cause can be missed.

Daniel had previously suffered heart failure in 2021, and Amber says she was able to resuscitate him then. After that incident, she says his health remained unstable.

“During the COVID period and following his cardiac arrest in 2021, Daniel experienced chest pains and increasingly frequent episodes of collapse, alongside seizure-type activity,” Amber said. “Despite repeated concerns being raised and multiple investigations being carried out, no confirmed cause was identified prior to his sudden death.”

Amber previously told UK newspaper Metro that Daniel experienced breathing difficulties as a baby and was diagnosed with aortic valve stenosis early in life.

A mother’s instincts — and a nurse’s training — pushed her to demand answers

Amber says she began pressing for genetic testing after another of her children was diagnosed with a heart condition.

“When my third child was born and became the second of our children to be diagnosed with a cardiac condition, I was not satisfied with the explanation that it was simply unfortunate,” she said. “As both a parent and a paediatric nurse, I felt something more was going on and pushed for genetic testing.”

That decision led to a breakthrough: Amber says three of her five children — including Daniel — have Alagille Syndrome, while two do not. Once the diagnosis was confirmed in the children, she says the condition was traced back to her husband, and likely to his father as well.

“There was no known family history of Alagille syndrome,” Amber said. “Without genetic testing, the condition went unrecognised across generations, although with hindsight, his father experienced multiple health problems that may now be viewed differently.”

Signs that were missed — until it was too late

Amber says her husband appeared “fit and well” before symptoms emerged. She also shared that Jason was born with one eye that never fully developed, leaving him blind in that eye. He wore a prosthetic eye, and the issue was treated as an isolated birth defect at the time. Amber says it is now believed to be connected to Alagille Syndrome.

As an adult, she says Jason dealt with recurrent pneumonia and later developed gout, which she believes was related to liver involvement — issues that weren’t linked to a broader condition because no one knew he had it.

After Jason’s death in 2017, Amber said a post-mortem found pulmonary artery hypoplasia and underdeveloped heart ventricles, consistent with hypoplastic heart syndrome, according to Metro.

Why Amber says Alagille Syndrome is often overlooked

Amber says there are many signs clinicians may miss unless they are looking for the broader pattern. Those can include “distinctive facial features, ocular involvement, spinal abnormalities known as ‘butterfly vertebrae,’ kidney disease, or blood vessel abnormalities affecting the brain.”

She says some people may present with milder symptoms that don’t immediately suggest a genetic disorder — such as failure to thrive, difficulty absorbing fats and vitamins, or bruising easily. Other early signs can include prolonged jaundice in babies, persistent itching, cholesterol deposits in the skin (xanthomas), pale stools, dark urine, poor growth, brittle bones, hearing loss, or fatigue — symptoms she says are often dismissed or attributed to more common childhood issues.

“Because symptoms can fluctuate, affect different organs at different times, or appear mild, Alagille syndrome is frequently overlooked unless clinicians take a joined-up, whole-person approach,” she said.

Amber also emphasized that severity can vary widely — even within the same family. She believes care for adults needs far more structure and consistency.

“At present, there are no established medical guidelines for standardised adult Alagille syndrome care, which leads to wide variation in monitoring, treatment, and long-term planning,” she said. She added that care has historically been led by hepatologists, but when liver disease isn’t the primary issue, oversight can become fragmented.

Turning grief into advocacy

Amber says she hopes that by sharing her family’s story, other families may get earlier diagnosis, better monitoring, and coordinated care — potentially preventing tragedies.

“If sharing our story helps even one family receive an earlier diagnosis, better monitoring, or more joined-up care, then something meaningful can come from our loss,” she said. “Greater awareness of rare genetic conditions like Alagille syndrome is vital, not just for children and their ongoing health needs, but for adults who may be unknowingly living with serious risks.”

Amber says several organizations have been meaningful to her family since the deaths of her husband and son. She highlighted the Alagille Syndrome Alliance in America for its work supporting families and advancing research. She also said The Evie Dove Foundation helped support her degree tuition fees.

In addition, she credited East Kent Mind and Revival for helping facilitate a peer-led bereavement group she recently started, called “Together In Grief,” for parents who have lost a child at any age and from any cause.