Finding out your kid has an illness that limits their quality of life or, worse, implies they may not live through delivery is a distressing thought.
When one family learned that their baby might not survive delivery, they braced themselves for tragedy. But they had no idea she would live for much longer…
Eric and Ruth Brown appeared to have a typical family life at their house. Brennan, their son, and Abigail, their daughter, were the couple’s two kids. Then they learned they were expecting their third baby, which brought them great joy.
They were going through the motions of pregnancy, as they were used to doing until their 20-week scan. Doctors became worried and noted an anomaly in the growth of their kid.
They discovered that the fetus had alobar holoprosencephaly, one of the most extreme forms of holoprosencephaly. It is a rare congenital brain abnormality in which the cerebral hemispheres do not separate. It is typically deadly, and in cases like these, moms have the option of choosing to terminate the pregnancy.
The Browns, on the other hand, opted to go on with the pregnancy even if it meant their kid would die shortly after birth. Doctors warned the pair that their kid may die in the pregnancy, during birth, or shortly after birth.
According to statistics from the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, most babies born with the disorder die prenatally, and if the baby survives delivery, just three percent have a chance of survival.
The pair, on the other hand, decided to take a chance. Every time Ruth and he sat down for a meal together, they were vividly conscious that Pearl was also sitting down for the same meal, Eric recalls. Clearly, this is often the case while dining with a pregnant lady, but Pearl’s awareness of such things was extremely acute. After being told that she would most likely not be born alive and expecting that the only time they’d have with her would be while she was in Ruth’s body, her existence became real in a way that Brennan and Abigail had not.
Pearl, their child with red hair and blue eyes, was born on July 27, 2012. Pearl was blind and deaf, and doctors told them she would never be able to speak or walk. The parents were well conscious of their daughter’s health and had even arranged funeral plans for her in case she died.
Nevertheless, their daughter Pearl Joy lived for more than 5 years. Pearl faced several challenges throughout her childhood, including seizures, breathing disorders, a feeding tube, and other medical complications and scares. Her life, on the other hand, was brimming with a lot of affection from her parents and siblings.
Her dad, photographer Eric Brown, documented moments of his exceptional daughter’s life as she connected with her siblings and parents.
Pearl breathed her last breath on March 29, 2018. She left an emptiness in her family that will never be replaced. Every year, on the anniversary of her death, her family takes a little trip and spends time together to remember and commemorate their late daughter.
Pearl, Baby Joy’s life was cut short, yet she inspired others all across the world. Her parents and siblings all adored her.