The Pearl Brown Story

Walking through life, love, and lament

Eric Brown

Ruth Brown

Eric Brown: My name is Eric Brown. I am a photographer, and I am married to my wife, Ruth. We have three kids: Brennan, Abby, and we had a daughter named Pearl who passed away in 2018.

Ruth Brown: When it was time for the ultrasound at 20 weeks, we basically thought we were going to show up to figure out if we were having a little boy or a little girl. The technician started giving us weird vibes, but we still just thought that she couldn’t get a good angle. The baby wasn’t moving the way that she wanted to get all of the pictures. So, at first, she sent us on to the midwife and told us we’d probably need more pictures later on. But of course, the techs aren’t allowed to tell you anything.

The first inkling that we got that something was actually wrong was when the midwife came into the room to talk to us after the ultrasound. She barely got in the door and just started weeping. She was like, “Things aren’t what we hoped they would be. Your baby girl is not developing well. And this is out of my realm. I need to send you to a specialist. He’ll give you more information.” She had to Google the name of the condition before she came in to talk to us; it’s not super common. It was the first that she had dealt with this specific condition. So she sent us on to a maternal-fetal medicine doctor, and he was anything but hopeful.

EB: She had a condition called Alobar holoprosencephaly, which, he said, was not compatible with life. 

RB: Basically, it means that her brain wasn’t forming properly. There was a lot more fluid and less brain matter inside her head. 

EB: He advised us to head across the hallway and terminate the pregnancy and go home and be thankful we had two other kids.

RB: And while we were very much happy with Brennan and Abby, Pearl was also our kid, and our job was to protect her. And so that’s what we did.

EB: It seemed like he was just presenting us with, “This is the obvious thing that you do. There’s really not anything other than to head across the hallway and terminate.” 

RB: We said that we couldn’t do that. We had just seen our baby girl moving on the ultrasound. She waved. I could not force her out of my body at that point and give up. I couldn’t do it. To us, the only option was to support our daughter as long as we could.

I remember having a conversation about naming her [while] sitting in the car with Eric. The name Pearl conjures so many different images of beauty coming out of something that’s not originally beautiful. And her middle name is Joy, and that was a prayer. 

EB: I think about the Bible story of the pearl of great value. It’s a simple name. I liked that, and I thought it reflects who she was.

RB: Once we found out that Pearl’s time with us would likely be limited, and might be limited to only living inside my belly, then we started acknowledging her presence a little bit more than we had with Brendan and Abby during their pregnancies. 

EB: We wanted to count everything and make sure that everything mattered and that her siblings wouldn’t make the mistake of thinking that Pearl was the sister that they almost had. She definitely was the sister that they already had.

RB: We ended up needing to induce labor about three weeks early. The plan was to have as calm and natural of a delivery as possible so that we could enjoy whatever time that we had with Pearl. Walking into the hospital, knowing that she was about to be born and not knowing what was going to come next, not knowing if Brennan and Abby were going to have a chance to meet her, not knowing if the photographer would get there in time to capture pictures of her with us, was a scary day.

EB: Pearl came out fighting. And we decided we would join her in the fight. The whole idea was to always follow Pearl’s lead, and she came out fighting. So we joined her in that fight. 

RB: Once she was born, we were able to see that she had a cleft as well. She was a little bit smaller than the other kids her age, but the main thing was that her brain wasn’t functioning the way that most people’s brains do. And that affected the way that she would move her body. That affected the way that she breathed. It affected everything about her life. 

When she was in what would typically be like the toddler years, she would kind of babble and wave her arms at us. It was sweet. She had bright red hair, and so one Halloween I dressed her up as Pippi Longstocking with the colored leggings and those sweet little pigtails poking out of the sides. Brennan and Abby would make a little pallet on the floor, and they would read books and sing to her. Abby would help with Pearl’s therapy exercises. 

Many days, it was the five of us hanging out inside of our house, just being together. [They weren’t] the normal things that other families did, but we loved it. We loved spending time together.

EB: The morning that Pearl passed, we didn’t sit in her room and sing hymns to her. We weren’t quoting Scripture. I don’t know about [everyone else], but I wasn’t praying. It seemed like the four of us laid in her bed, completely lost and shell-shocked, for hours and hours and hours, because the process of turning off a ventilator for such a strong kid like Pearl was really, really drawn out.

RB: It was right at the beginning of Lent. So we spent that season waiting for a new Easter and feeling lament heavier than we ever had before. 

EB: I’ve never felt a darkness like the darkness that I felt coming in waves that morning. 

RB: And she passed away right before Easter.

EB: Some days the hardest part is just her not being here. Some days the hardest part is wanting to be close to her body and to spend time physically with her. 

RB: I do have joy in the world, but I probably look a little bit less happy most days. And that’s an OK difference.

EB: Within the community of people saying choose life for kids like Pearl, for children with special needs and poor prenatal diagnoses, I feel like we are very equipped for how to choose life and how to say yes, how to advocate for life, and how to support. But if we’re going to advocate that children like her be carried to term, we’ve got to know that these children oftentimes are not long for this world. And, I could be wrong, but I think we need to be equally as invigorated with learning how and helping each other know how to say goodbye to these children. 

We knew Pearl was never going to turn into a grandmother at some point or grow into old age. She was going to have a short life. But when the grief hit, I was not prepared. I felt my faith sliding through my fingers like sand. And it wasn’t like I was trying to deconstruct or explore leaving the faith, as if I wanted nothing to do with God. I wanted him, if for no other reason [than] I could find no other way forward. My friends couldn’t help me, therapists couldn’t help me, pastors couldn’t help me. Nobody could help me. So I knew that the only way forward was going to be Christ. And that’s only because he’s promised to finish whatever good work he had started in me. 

And though I could see nothing at the time, I have a really long history of seeing God already having begun work in me. That was it. That was all I had. But it was dying and collapsing, and it seemed like the worst possible end to Pearl’s story: 

Oh yeah, and then Dad’s faith just disappeared. It felt crazy to me, and I couldn’t make sense of it. I couldn’t see straight. I behaved in the way that you would think anybody who couldn’t see straight would behave. And then one day—I don’t know why he chose to start moving when he did—God just started to turn the lights back on. 

It was a split second before it was too late. He waited till then to move. And then it felt like he rushed in and started turning all the lights in the room on. Stop, stop, stop, stop. Enough of the darkness. Enough of the sin. Enough of the unbelief. Enough of all of this. I never left. I was here the whole time, and I didn’t expect anything from you. I didn’t expect you to do this well. I didn’t expect you to do this missionally. I didn’t expect anything. All I want to do is to be your Dad. 

That’s all. That’s all he wanted. And I’m grateful he moved when he did.

RB: It’s OK to really, really miss my daughter. And being upset or sad or emotional about that doesn’t mean that I don’t know that God’s going to make it all OK again. It’s just not going to feel OK tomorrow or next week. But I have peace in the thought that it’ll be OK in a thousand years, and the time that I will have spent missing her will be just this little blip in this timeline of what God’s been doing. That’ll make it OK.

EB: I feel like I had a really robust theology, and I had a really big view of God. I could clearly articulate the relationship between his sovereignty and suffering. None of that was enough to carry me through that dark night of the soul. None of that. None of my big perspective on him, none of my right theologies. But I have a God who was bigger than my right theologies then, and I have a God who was bigger than my wrong perspectives during that first season of losing Pearl. He was just so much bigger than even I know now. And that gives me so much confidence. He’s good.

View “The Pearl Brown Story” at https://erlc.com/about/pearlbrown/

Eric Brown is a photographer based in Nashville, Tennessee. 

Ruth Brown is a wife and mother.

Article 12: The Future of AI

We affirm that AI will continue to be developed in ways that we cannot currently imagine or understand, including AI that will far surpass many human abilities. God alone has the power to create life, and no future advancements in AI will usurp Him as the Creator of life. The church has a unique role in proclaiming human dignity for all and calling for the humane use of AI in all aspects of society.

We deny that AI will make us more or less human, or that AI will ever obtain a coequal level of worth, dignity, or value to image-bearers. Future advancements in AI will not ultimately fulfill our longings for a perfect world. While we are not able to comprehend or know the future, we do not fear what is to come because we know that God is omniscient and that nothing we create will be able to thwart His redemptive plan for creation or to supplant humanity as His image-bearers.

Genesis 1; Isaiah 42:8; Romans 1:20-21; 5:2; Ephesians 1:4-6; 2 Timothy 1:7-9; Revelation 5:9-10

Article 11: Public Policy

We affirm that the fundamental purposes of government are to protect human beings from harm, punish those who do evil, uphold civil liberties, and to commend those who do good. The public has a role in shaping and crafting policies concerning the use of AI in society, and these decisions should not be left to those who develop these technologies or to governments to set norms.

We deny that AI should be used by governments, corporations, or any entity to infringe upon God-given human rights. AI, even in a highly advanced state, should never be delegated the governing authority that has been granted by an all-sovereign God to human beings alone. 

Romans 13:1-7; Acts 10:35; 1 Peter 2:13-14

Article 10: War

We affirm that the use of AI in warfare should be governed by love of neighbor and the principles of just war. The use of AI may mitigate the loss of human life, provide greater protection of non-combatants, and inform better policymaking. Any lethal action conducted or substantially enabled by AI must employ 5 human oversight or review. All defense-related AI applications, such as underlying data and decision-making processes, must be subject to continual review by legitimate authorities. When these systems are deployed, human agents bear full moral responsibility for any actions taken by the system.

We deny that human agency or moral culpability in war can be delegated to AI. No nation or group has the right to use AI to carry out genocide, terrorism, torture, or other war crimes.

Genesis 4:10; Isaiah 1:16-17; Psalm 37:28; Matthew 5:44; 22:37-39; Romans 13:4

Article 9: Security

We affirm that AI has legitimate applications in policing, intelligence, surveillance, investigation, and other uses supporting the government’s responsibility to respect human rights, to protect and preserve human life, and to pursue justice in a flourishing society.

We deny that AI should be employed for safety and security applications in ways that seek to dehumanize, depersonalize, or harm our fellow human beings. We condemn the use of AI to suppress free expression or other basic human rights granted by God to all human beings.

Romans 13:1-7; 1 Peter 2:13-14

Article 8: Data & Privacy

We affirm that privacy and personal property are intertwined individual rights and choices that should not be violated by governments, corporations, nation-states, and other groups, even in the pursuit of the common good. While God knows all things, it is neither wise nor obligatory to have every detail of one’s life open to society.

We deny the manipulative and coercive uses of data and AI in ways that are inconsistent with the love of God and love of neighbor. Data collection practices should conform to ethical guidelines that uphold the dignity of all people. We further deny that consent, even informed consent, although requisite, is the only necessary ethical standard for the collection, manipulation, or exploitation of personal data—individually or in the aggregate. AI should not be employed in ways that distort truth through the use of generative applications. Data should not be mishandled, misused, or abused for sinful purposes to reinforce bias, strengthen the powerful, or demean the weak.

Exodus 20:15, Psalm 147:5; Isaiah 40:13-14; Matthew 10:16 Galatians 6:2; Hebrews 4:12-13; 1 John 1:7 

Article 7: Work

We affirm that work is part of God’s plan for human beings participating in the cultivation and stewardship of creation. The divine pattern is one of labor and rest in healthy proportion to each other. Our view of work should not be confined to commercial activity; it must also include the many ways that human beings serve each other through their efforts. AI can be used in ways that aid our work or allow us to make fuller use of our gifts. The church has a Spirit-empowered responsibility to help care for those who lose jobs and to encourage individuals, communities, employers, and governments to find ways to invest in the development of human beings and continue making vocational contributions to our lives together.

We deny that human worth and dignity is reducible to an individual’s economic contributions to society alone. Humanity should not use AI and other technological innovations as a reason to move toward lives of pure leisure even if greater social wealth creates such possibilities.

Genesis 1:27; 2:5; 2:15; Isaiah 65:21-24; Romans 12:6-8; Ephesians 4:11-16

Article 6: Sexuality

We affirm the goodness of God’s design for human sexuality which prescribes the sexual union to be an exclusive relationship between a man and a woman in the lifelong covenant of marriage.

We deny that the pursuit of sexual pleasure is a justification for the development or use of AI, and we condemn the objectification of humans that results from employing AI for sexual purposes. AI should not intrude upon or substitute for the biblical expression of sexuality between a husband and wife according to God’s design for human marriage.

Genesis 1:26-29; 2:18-25; Matthew 5:27-30; 1 Thess 4:3-4

Article 5: Bias

We affirm that, as a tool created by humans, AI will be inherently subject to bias and that these biases must be accounted for, minimized, or removed through continual human oversight and discretion. AI should be designed and used in such ways that treat all human beings as having equal worth and dignity. AI should be utilized as a tool to identify and eliminate bias inherent in human decision-making.

We deny that AI should be designed or used in ways that violate the fundamental principle of human dignity for all people. Neither should AI be used in ways that reinforce or further any ideology or agenda, seeking to subjugate human autonomy under the power of the state.

Micah 6:8; John 13:34; Galatians 3:28-29; 5:13-14; Philippians 2:3-4; Romans 12:10

Article 4: Medicine

We affirm that AI-related advances in medical technologies are expressions of God’s common grace through and for people created in His image and that these advances will increase our capacity to provide enhanced medical diagnostics and therapeutic interventions as we seek to care for all people. These advances should be guided by basic principles of medical ethics, including beneficence, non-maleficence, autonomy, and justice, which are all consistent with the biblical principle of loving our neighbor.

We deny that death and disease—effects of the Fall—can ultimately be eradicated apart from Jesus Christ. Utilitarian applications regarding healthcare distribution should not override the dignity of human life. Fur- 3 thermore, we reject the materialist and consequentialist worldview that understands medical applications of AI as a means of improving, changing, or completing human beings.

Matthew 5:45; John 11:25-26; 1 Corinthians 15:55-57; Galatians 6:2; Philippians 2:4

Article 3: Relationship of AI & Humanity

We affirm the use of AI to inform and aid human reasoning and moral decision-making because it is a tool that excels at processing data and making determinations, which often mimics or exceeds human ability. While AI excels in data-based computation, technology is incapable of possessing the capacity for moral agency or responsibility.

We deny that humans can or should cede our moral accountability or responsibilities to any form of AI that will ever be created. Only humanity will be judged by God on the basis of our actions and that of the tools we create. While technology can be created with a moral use in view, it is not a moral agent. Humans alone bear the responsibility for moral decision making.

Romans 2:6-8; Galatians 5:19-21; 2 Peter 1:5-8; 1 John 2:1

Article 2: AI as Technology

We affirm that the development of AI is a demonstration of the unique creative abilities of human beings. When AI is employed in accordance with God’s moral will, it is an example of man’s obedience to the divine command to steward creation and to honor Him. We believe in innovation for the glory of God, the sake of human flourishing, and the love of neighbor. While we acknowledge the reality of the Fall and its consequences on human nature and human innovation, technology can be used in society to uphold human dignity. As a part of our God-given creative nature, human beings should develop and harness technology in ways that lead to greater flourishing and the alleviation of human suffering.

We deny that the use of AI is morally neutral. It is not worthy of man’s hope, worship, or love. Since the Lord Jesus alone can atone for sin and reconcile humanity to its Creator, technology such as AI cannot fulfill humanity’s ultimate needs. We further deny the goodness and benefit of any application of AI that devalues or degrades the dignity and worth of another human being. 

Genesis 2:25; Exodus 20:3; 31:1-11; Proverbs 16:4; Matthew 22:37-40; Romans 3:23

Article 1: Image of God

We affirm that God created each human being in His image with intrinsic and equal worth, dignity, and moral agency, distinct from all creation, and that humanity’s creativity is intended to reflect God’s creative pattern.

We deny that any part of creation, including any form of technology, should ever be used to usurp or subvert the dominion and stewardship which has been entrusted solely to humanity by God; nor should technology be assigned a level of human identity, worth, dignity, or moral agency.

Genesis 1:26-28; 5:1-2; Isaiah 43:6-7; Jeremiah 1:5; John 13:34; Colossians 1:16; 3:10; Ephesians 4:24