A Baby Born Too Soon

What Baby Chance’s birth tells us about neonatal survival, prematurity, and the cost of forced gestation

On June 13, 2025, after nearly four months of mandated somatic support, Adriana Smith’s body underwent an emergency cesarean section.

She had been declared legally brain-dead on February 10, 2025 under Georgia Code § 31-9-2, which requires continuation of life support until at least 32 weeks’ gestation.

Her son, Chance, was born at just 25 weeks, weighing 1 lb 13 oz, and was immediately taken to the neonatal intensive care unit (NICU).

And only then—once the state’s gestational mandate was fulfilled—was Adriana finally allowed to rest.

⚖️ A Body Maintained, A Baby Delivered

This is the uncomfortable truth:

Adriana’s life support continued not for her own benefit, but because Georgia law prioritized her pregnancy above her end-of-life wishes.

Declared brain-dead at 8–9 weeks’ gestation, hospital teams maintained ventilators, vasopressors, hormone replacement, and antibiotics—not to treat Adriana, but to carry her fetus toward 32 weeks.

Her mother, April Newkirk, stayed by her side through every round of monitoring and medication.

The plan was to maintain life support until at least 32 weeks—

but her body didn’t make it that far.

At 25 weeks, routine fetal monitoring flagged acute distress—

and the hospital acted.

Baby Chance was delivered via emergency C-section,

weighing 1 lb 13 oz,

then immediately rushed to the NICU.

The machines were turned off.

And Adriana was declared dead for the second time.

👶🏽 What It Means to Be Born at 25 Weeks

To the public, “a baby was born” sounds like a victory.

But for clinicians and families, 25 weeks marks the start of an agonizing journey of survival.

A 25-week infant is called a micro-preemie:

• Weighs under 2 lbs (Baby Chance was 1 lb 13 oz)

• Lungs lack mature surfactant, making breathing nearly impossible without support

• Digestive tract immature, requiring IV nutrition (TPN) and feeding tubes

• Skin is so fragile it can tear during routine care

• Immune system underdeveloped, driving high infection risk

Within minutes of birth, Baby Chance required:

• Intubation and mechanical ventilation

• Surfactant therapy to prevent lung collapse

• Central IV access for fluids, nutrition, and medications

• Heat support in an incubator to maintain body temperature

• Continuous monitoring of vital signs, blood gases, and labs

Even with expert NICU care, the average stay for a 25-weeker is 90–120 days—stretching well past the original due date.

👶🏽 Survival & Risks: What 25-Week Outcomes Really Look Like

Nationally, about 65–70% of infants born at 25 weeks survive to NICU discharge, though outcomes vary by center and individual risk factors.

Among those survivors:

• Chronic lung disease (bronchopulmonary dysplasia) affects ~50%, often requiring prolonged respiratory support

• Severe intraventricular hemorrhage (grade III–IV brain bleeds) occurs in ~20%, increasing the risk of cerebral palsy and cognitive impairment

• Retinopathy of prematurity impacts ~10%, risking vision loss without timely treatment

• Neurodevelopmental impairments (motor or cognitive delays, cerebral palsy) emerge in 30–40% by early childhood

Each additional week in utero significantly improves odds:

• Survival at 26 weeks rises to ~75–80%

• Rates of severe brain bleeds and chronic lung disease decline by 5–10% for each week gained

Even those who survive face lifelong challenges:

• Chronic health issues (asthma, hearing loss, neurodevelopmental disorders)

• Repeated hospitalizations and emergency visits

• Intensive therapies (PT/OT/Speech) and special education needs

• Emotional toll on families from ongoing uncertainty and care demands

💡 A Caution, Not a Success Story

Prior to birth, ultrasounds detected fluid on Baby Chance’s brain (ventriculomegaly)—a finding seen in roughly 1–2 per 1,000 births, and even more common in extreme preemies—that can herald bleeding or structural anomalies. This is not a minor hiccup; it carries serious downstream risks:

• Seizures

• Cognitive impairment

• Need for surgical shunts (up to 60% of preemies with ventriculomegaly require one within the first year)

• Lifelong disability (30–40% face significant neurodevelopmental delays)

Doctors have been publicly cautious.

Even Adriana’s mother, April Newkirk, acknowledged:

“He may be blind. May not be able to walk. May not survive once he’s born. But we’re going to love him just the same.”

That’s not resignation. That’s realism.

And it reflects the truth many families of micro-preemies face: survival doesn’t always mean full recovery. Follow-up MRIs and developmental assessments will determine whether Chance needs shunts, ongoing physical and occupational therapy, or other interventions—any of which adds emotional stress and medical complexity.

🏥 Breaking Down the Bill: The Real Cost of a Micro-Preemie

A single day in the NICU for a ventilated 25-weeker can run $3,000–$5,000, thanks to specialized nursing, respiratory therapy, and high-cost medications. Typical cost breakdowns include:

• Ventilator support & respiratory therapy: $1,000–$1,500 per day

• Surfactant & other specialty drugs: $500–$800 per dose

• Advanced imaging & labs: $300–$500 per set of labs; $1,000+ per ultrasound or scan

• Nutrition (TPN/IV fluids): $400–$600 per day

With an average NICU stay of 90–100 days for a 25-week infant, families often face bills in the $270,000–$500,000 range—before physician fees, ancillary services, or post-discharge therapies. If long-term disabilities arise, additional lifetime costs may include:

• Shunt placement & neurosurgical follow-up: $50,000–$100,000

• Early intervention therapies (PT/OT/Speech): $20,000–$30,000 per year

• Special education & support services: $15,000–$25,000 per year

💸 Who Pays? Accountability & Funding

The Smith family’s GoFundMe seeks $275,000 to cover NICU and post-discharge needs—yet Georgia law forced this medical journey.

No government agency has stepped forward to share costs or provide dedicated neonatal support.

A more equitable model might include:

• State-sponsored neonatal care funds (as in the U.K.) to underwrite NICU expenses for policy-mandated gestations

• Medicaid waivers covering extended NICU stays and early intervention services

• Mandatory hospital charity-care thresholds tied to law-driven cases

Without policy reform, families like Chance’s shoulder nearly all financial risk—even when state law compels treatment.

Aside: The Medicaid Gap

Under the American Rescue Plan, states could extend postpartum Medicaid from 60 days to 12 months—49 states did so to reduce maternal and neonatal complications. However, recent federal cuts to Medicaid’s FMAP and tighter eligibility rules threaten to roll back that extension to just 60 days. For a micro-preemie like Chance—whose NICU stay can last 90–100 days at $3,000–$5,000 per day—this cliff means coverage lapses mid-treatment, leaving families on the hook for six-figure medical bills.

Aside: Private Insurance Isn’t a Panacea

Even with “comprehensive” employer-sponsored plans, high deductibles and 20–30% coinsurance mean parents often face $20,000–$50,000 out-of-pocket. Annual out-of-pocket maximums rarely exceed $10,000, but NICU bills can exceed $300,000—so families hit both deductible and coinsurance limits before the plan’s cap is met.

🧠 Ethical Questions Few Want to Ask

Maintaining a brain-dead patient for 16 weeks is unprecedented.

Medical literature documents only ~30 cases of brain-dead gestation—and none beyond 6 weeks.

This raises urgent questions:

‼️ What happens when a fetus grows in a body that cannot regulate blood pressure, hormones, or temperature?

‼️ How do repeated antibiotic and hormone cycles affect placental function and fetal organ maturation?

‼️ Was Baby Chance effectively part of a non-consensual medical experiment, conducted without IRB oversight or formal consent protocols?

‼️ If fetal injury or long-term disability occurs, who bears legal and ethical responsibility—the hospital, the state that mandated support, or oversight bodies?

Adriana’s family launched a GoFundMe for $275,000—but no agency has accepted liability for this outcome.

❤️ The Toll on Families: Emotional & Psychosocial Impact

Parents of micro-preemies endure extreme emotional strain:

• Over 25% develop PTSD or clinical anxiety during and after NICU hospitalization.

• Nearly 30% experience postpartum depression—double the rate in full-term parents.

• Fathers face similar stress levels and are at increased risk for substance misuse.

• Physical separation—limited kangaroo care in early weeks—hinders bonding and intensifies anxiety.

Each day in the NICU becomes a roller coaster of hope and fear:

• Parents track every ounce gain, count alarms, and live in constant vigilance.

• Work, finances, and sibling routines get disrupted.

• Long-term mental-health support is critical but often under-resourced.

⚖️ Georgia’s Brain-Death Gestation Law: How We Got Here

Under Georgia Code §31-9-2, once brain death is declared, life support must continue until fetal viability (commonly 24–32 weeks) or until a court orders otherwise.

Unlike most states—where advance directives or multidisciplinary ethics reviews guide end-of-life care—Georgia’s statute offers no exceptions for patient wishes.

Only three states nationwide have explicit brain-death gestation laws; others rely on hospital policy or case-by-case ethics committees.

Current legislation (SB 123) would:

• Require courts to honor documented advance directives in pregnancy.

• Limit somatic support to cases with explicit family consent.

• Introduce judicial oversight only for ambiguous situations.

Without these reforms, pregnant patients lose autonomy—and families bear the emotional, physical, and financial fallout alone.

📚 Lessons from Other Brain-Dead Gestations

These cases show how timing and duration shape outcomes.

🌍 Florida (2018)

22 weeks → 33 weeks on support (11 wk)

• 6 months in NICU

• Mild chronic lung disease at discharge

• At 2 years: normal developmental milestones

🌍 Texas (2016)

18 weeks → 28 weeks on support (10 wk)

• Recurrent infections required multiple antibiotic courses

• Infant survived to discharge with severe cerebral palsy

• Ongoing physical and speech therapy

🔑 Key Pattern

• Longer support at later gestational ages yields better neurologic and pulmonary outcomes.

• Shorter support or earlier start risks infection, hemorrhage, and permanent disability.

🧬 Science in a Stalled Body: Fetal Development on Life Support

Forced gestation in a brain-dead body is physiologically uncharted.

• Hormone Imbalance

– Exogenous replacement vs. natural placental signals

– Possible effects on fetal thyroid and adrenal maturation

• Hemodynamic Instability

– Fluctuating vasopressors alter placental perfusion

– Risk of intermittent hypoxia

• Infection Risk

– Daily antibiotics vs. emerging resistant organisms

– Chorioamnionitis rates unknown

• Unknown Epigenetics

– No data on long-term gene expression changes

– Potential lifelong metabolic or neurodevelopmental impact

Aside: A High-Risk Medical ExperimentBrain-death somatic support in pregnancy has no formal protocols or IRB oversight.• ~30 documented cases total; most ≤ 6 wk support• Adriana’s 16-week support far exceeds precedent• No informed-consent frameworks for the fetus as research subject• Urgent need for ethical guidelines and legal accountability

❤️ What Baby Chance Deserves

Baby Chance didn’t ask for this.

He didn’t choose to be born this way, at this time, under these conditions.

And while the headlines have moved on, his family hasn’t.

They’re in a NICU right now. Watching machines. Hoping for ounces gained. Praying for normal scans.

They’re living the consequences of a decision they didn’t get to make.

“He’s here now,” Newkirk said.

“We’re going to love him just the same.”

That love is unconditional.

But the system’s obligation is not just to care, but to act protect, to respect, and to do no harm.

✅ What This Means for Patients and Providers

🧾 For Patients & Families

Know Your Rights—And Their Limits

It is wise and courageous to put your wishes in writing, especially regarding pregnancy and critical illness. However, please note:

Some states have laws that limit or override a pregnant person’s advance directives—particularly if the fetus is considered potentially viable. In those states, your stated wishes may not be legally enforceable if you are pregnant.

Despite these barriers, documenting your preferences is still essential:

• It communicates your values to your loved ones and health-care team.

• It helps your health-care proxy advocate on your behalf.

• It can support requests for transfer to a different hospital or state, should that become necessary.

• It is a form of advocacy—helping to expose and challenge unjust policies.

We recommend:

• Completing a standard state-approved advance directive or living will.

• Attaching this pregnancy-specific addendum.

• Discussing your wishes with your health-care proxy, OB team, and family.

• Consulting a legal professional about your state’s laws.

🔗 Pregnancy-Specific Advance Directive (Addendum)

🏥 For Providers & Hospitals

Adopt and train on a NICU–OB Brain-Death Protocol Checklist. Audit compliance and review outcomes regularly.

Even where state law constrains patient wishes, honoring their documented values is a professional, ethical, and human responsibility.

NICU–OB Brain-Death Protocol Checklist

1. Confirm brain death per AAN guidelines; document date and time.

2. Verify gestational age and establish viability threshold (e.g., 24 weeks).

3. Review the patient’s pregnancy-specific advance directive and proxy instructions; seek ethics and legal consultation if state law may override patient preferences.

4. Convene OB, NICU, ethics, legal, social work, and family for a multidisciplinary huddle (ideally within 24 hours).

5. Decide on a target gestational age for delivery (e.g., 32 weeks) based on fetal growth and family wishes, within the limits of law and safety.

6. Initiate somatic support as appropriate: hormone replacement, antibiotics, vasopressors, nutrition.

7. Establish a fetal monitoring schedule: ultrasound, non-stress tests, labs.

8. Define and document clear triggers for emergency C-section (e.g., decelerations, maternal instability).

9. Prepare the NICU team for immediate newborn resuscitation and transfer.

10. Withdraw maternal support per advance directive and legal allowances once the fetus is delivered.

11. Debrief with all teams and document lessons learned for quality improvement.

Without these tools, patient autonomy is further eroded, and families bear the emotional, physical, and financial burdens alone.

Important Note on Limitations

⚠️ State Laws May Restrict Your Rights

Some states invalidate or override advance directives during pregnancy, requiring that life-sustaining treatment continue if the fetus is potentially viable. This means your wishes, or your proxy’s instructions, might not be honored—even if you have completed this directive—depending on where you live and receive care.

• Always check your state’s law.

• Discuss these issues openly with your care team and loved ones.

• Consider advocacy for policy change if this matters to you.

Next: What Could Have Changed This

In our next post, we’ll examine the critical decision points where intervention could have—and should have—happened:

• Early triage: Recognizing red flags in Adriana’s initial headache and collapse could have triggered immediate neuroimaging.

• Advanced imaging: Rapid CT or MRI might have diagnosed her hemorrhage or clot days earlier, shifting care from conservative management to definitive treatment.

• Family advocacy: A clear, pregnancy-specific advance directive and on-site legal counsel might have empowered April Newkirk to contest forced somatic support and influence the care timeline.

• Patient-facing tools: Platforms like Diosa Ara can enable real-time symptom logging, provider alerts, and peer support—so warning signs aren’t missed and families can escalate concerns faster.

Because Adriana’s tragedy wasn’t inevitable but the product of missed signals and delayed action.

There is power in the hours and days between that first headache and the collapse—and in that space, there’s still time to save lives.

Your right to bodily autonomy should not end with pregnancy. Until laws catch up, the most powerful thing you can do is document your wishes, share them, and support the fight for real patient choice.