The miracle baby who will never walk, speak or read, born after family refused to terminate pregnancy
Daily Mail: Pearl Joy Brown was born with a rare genetic disorder causing her brain’s development to stall in the first weeks of pregnancy, leaving her with a cleft upper lip, and a three per cent chance of survival.
A routine ultrasound four-month into the pregnancy revealed that Ruth, 28, and Eric, 31, Brown’s unborn daughter had alobar holoprosencephaly, and specialists said she would most likely not make it to term.
Faced with religious, medical and ethical decisions, the Nashville couple refused to terminate their pregnancy early. Now, despite the fact doctors have given Pearl a year to live, who will likely never walk, read or speak, her parents are fighting for her survival.
Mr Brown told The Tennessean: ‘If there is a chance, you say yes to that chance. The only thing I know about parenting is that you say yes.’
The couple, who have two children, Brennan, 5, and Abbey, 3, celebrated Pearl’s 12-week-old birthday today, and say they are taking each day at a time.
According to the Dallas-based Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, only three per cent of babies diagnosed with Pearl’s genetic condition, where her brain never divided into two hemispheres, actually survive birth. ‘We didn’t think she was going to be able to breathe,’ Mr Brown admitted. ‘She is here, and her brain is telling her how to live. God has designed Pearl the way he wanted, for his glory and our good,’ he added.
The couple are members of The Village Chapel in Hillsboro Village, a nondenominational church.
Because Pearl is not strong enough to nurse, she is fed through a nasal gastric tube. She has seizures daily and since her birth, she has returned to the hospital more than five times because of her weakened immune system. ‘She’s fighting, and we’re fighting with her,’ Mrs Brown said.
Thanks to a blog that a family friend of the Brown’s started, which follows Pearl’s journey, support for the three-month-old has poured in from around the world. ‘God has designed Pearl the way he wanted, for his glory and our good’
As well as the couple’s support network through their church, which paid their bills when Mr Brown took several months leave to care for his wife and Pearl, donations of nearly $12,000 were also given to the family so they could buy a minivan.
One parents must always ride in the back with Pearl, and the couple’s old car wasn’t able accommodate the whole family. Mr Brown said he is also grateful for Tennessee’s TennCare program, which is covering the cost of Pearl’s $1 million and growing medical care.
The couple admit that not many people understood their refusal to end the pregnancy early, despite Pearl’s low chance of survival. Kristina Guisler, a friend of Mrs Brown, said she wasn’t sure continuing with the pregnancy was the right decision. However, she said that seeing the love the Brown’s have for Pearl, who Ms Guisler calls a ‘little firecracker,’ reaffirmed her ‘faith in humanity and in the power of prayer.‘
Elizabeth Heitman, an associate professor in the Center for Biomedical Ethics and Society at Vanderbilt University Medical Center said: ‘The diagnosis of a fatal disease of in utero is a terrible test of faith for anyone. There is no right answer. ‘We don’t have a clear religious consensus on the nature of an afterlife for the fetus or very young child,’ she added.
Mrs Brown, who quotes Psalm 139 in that Pearl is ‘fearfully and wonderfully made,’ said she believes ‘when she is done here on Earth – she is not done for good. Heaven will be easier for her‘.