Finding out your baby might have a condition that hampers their quality of life or worse yet; means they might not even get to live past birth can be a heartbreaking concept.
When this family found out their baby might not make it past birth, they prepared for heartbreak. But little did they know, she would survive much longer…
Eric and Ruth Brown had what seemed like an ordinary family life in their home. The couple had two children, their son Brennan and their daughter Abigail. Then they received the news they were expecting their third child which gave them a lot of happiness.
They were going through the normal run-throughs of pregnancy; something they were used to until their 20-week ultrasound. Doctors seemed concerned and flagged an abnormality in their baby’s development.
They found the foetus had alobar holoprosencephaly, which is one of the most severe form of holoprosencephaly. It is a rare congenital brain malformation in which there is no separation of the cerebral hemispheres. It is usually a fatal condition and in instances such as this, mothers can choose whether they want to terminate the pregnancy.
However, the Browns decided they would go through with the pregnancy, even if it meant their baby would die right after birth. Doctors told the couple to be prepared for the possibility of their baby dying in the womb, at birth, or shortly after birth.
Most babies born with the condition usually die prenatally, and if the baby survives past birth, only three percent of them have a chance of survival according to statistics from the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.
The couple however wanted to risk it. Eric remembers the time, saying, “Every time Ruth and I sat down for a meal together we were keenly aware that Pearl too was sitting down for the same meal. Certainly that is always the case when you dine with a pregnant woman but the awareness of such things became incredibly sharp with Pearl. After being told that she would likely not be born alive and assuming that the only time we’d have with her was while she was in Ruth’s body, her presence became tangible in a way we did not know to experience with Brennan and Abigail.”
Their daughter Pearl was born on July 27, 2012, with red hair and blue eyes. Doctors told them Pearl was blind and deaf, and would never be able to speak or walk. The parents were well aware of their daughter’s condition and had even discussed her funeral arrangements among themselves, prepared for if they lost her.
However, their daughter Pearl Joy lived a life of over 5 years. During her life, Pearl had to face a lot of problems which included, seizures, respiratory issues, a feeding tube, and other medical issues and scares. However, her life was also filled with a lot of love from her parents and siblings.
Her father, Eric Brown, a photographer by profession, captured moments of his special daughter’s life as she interacted with her siblings and parents.
On March 29, 2018, Pearl took her last breath. She left a hole in her family that can never be filled. Every year since, on the day of her death, her family makes sure to take a little trip and spend time together to remember their late daughter and honor her memory.
Baby Pearl Joy’s life might have been short, but she inspired people all around the world. She was much loved by her parents and siblings.
Share this piece to inspire your friends and family with baby Pearl Joy’s life and example.
