It’s heartbreaking to think your newborn baby may have a condition that limits their quality of life or, even worse, means they may not make it past birth.
This family was prepared for heartbreak when they learned their newborn might not survive. However, she would live for much longer than anyone expected.
Eric and Ruth Brown seemed like your average American couple. The couple has a boy named Brennan and a daughter named Abigail. They were ecstatic to learn that they were expecting their third child.
Up until the 20-week ultrasound, they were experiencing the typical pregnancy drills. The doctors sounded worried and alerted them to a possible developmental issue in their child.
Alobar holoprosencephaly is among the most severe forms of holoprosencephaly discovered in the fetus. No separation of the cerebral hemispheres is an uncommon congenital brain abnormality. Pregnancies affected by this illness often end in death, and in extreme cases, women have the option of terminating their pregnancies.
The Browns, however, decided to carry the pregnancy to term despite the likelihood that their child would not survive. Doctors warned the couple that their newborn baby might not survive the pregnancy, delivery, or first days of life.
According to data compiled by the Carter Centers for Brain Research on Holoprosencephaly and Related Malformations, just three percent of infants born with the disease survive through the neonatal period.
Nevertheless, the pair decided to take a risk. Eric reflects, “Knowing that she probably wouldn’t survive birth and assuming that the only time we’d spend with her was while she was in Ruth’s body made her presence tangible in a way that we hadn’t known to experience with any of Ruth’s other children.”
Pearl, their redheaded and blue-eyed daughter, was born on July 27, 2012. Their doctors had informed them Pearl was deaf, blind, and would never talk or walk. The parents knew their daughter was sick and planned ahead for the worst by discussing funeral arrangements.
Yet, their little girl Pearl Joy outlived them all by more than five years. Seizures, breathing troubles, a feeding tube, and other medical challenges and scares plagued Pearl throughout her childhood. She also had a lot of support from her family.
Eric Brown, a professional photographer, took pictures of his daughter growing up with her brothers and parents.
Pearl passed away on March 29, 2018. Without her, her family is forever changed. Since her passing, her family has made it a tradition to take a short vacation and spend quality time together on her anniversary every year.
Adorable as a newborn pearl. Her time on Earth may have been brief, but the impact Joy had on the people around her will last a lifetime. Her parents were quite fond of her.