Mom With Stage 4 Lung Disease Ambrosia Howell Gave Birth to Daughter Aurora at 6 Pounds 14 Ounces, Then a Newborn Screening Found a Rare Lifelong Deficiency

Doctors told Ambrosia Howell that a pregnancy could kill both her and her baby. The 30-year-old, who has stage 4 bronchiolitis obliterans, a rare chronic lung disease, went ahead anyway, and daughter Aurora was born Aug. 19 at University of Utah Hospital weighing 6 pounds, 14.4 ounces. Then a newborn screening found a rare lifelong deficiency in the baby, EastIdahoNews.com reported.

The condition is medium-chain acyl-CoA dehydrogenase deficiency, known as MCAD deficiency. It has no cure, but the family now knows about it from the first weeks of Aurora’s life, and her mother calls the outcome of the birth “the best possible case scenario.”

Oxygen since 2024 and a risky pregnancy

Ambrosia Howell was diagnosed in Pocatello, Idaho, in 2025, at age 29, and has used oxygen since 2024, according to EastIdahoNews.com. Bronchiolitis obliterans is a disease in which the smallest airways of the lungs become inflamed, scarred and narrowed or blocked, National Jewish Health explains. Its most common signs are a dry, persistent cough and shortness of breath, and several forms cannot be reversed. Treatment mainly involves corticosteroids, with immunosuppressive drugs and lung transplants used in some cases, and the center says treatment can help stabilize or slow progression.

The pregnancy was unplanned and was the couple’s first. She and her husband, Jasen Howell, 35, an Army veteran, moved from Idaho Falls to Utah over the summer so she could receive specialty care at the University of Utah in Salt Lake City. Doctors there warned of the risk of death for both mother and baby, Howell said, and she was advised to consider abortion, which she declined.

Howell told the news site that she wanted to have her baby girl and give her a chance, even despite her own health.

Thirteen hours of labor and 12 days in the NICU

Doctors monitored the pregnancy with multiple nonstress tests. The due date was Sept. 5, and an induction with a forceps-assisted delivery was planned for Aug. 30. Howell asked to be induced sooner because of the pain and difficulty her lung disease caused.

During labor, doctors worried about Aurora’s heart rate dropping and whether she was getting enough oxygen. The baby, full name Aurora Rosalie Ayla Howell, needed immediate help with oxygen after she was born and spent 12 days in the neonatal intensive care unit, a stretch that families such as the parents of Baby Quinn Hackett, born at 25 weeks, know well.

Howell said the family made it through. Aurora was about two months old when the story ran, and her parents have since learned what her condition asks of them every few hours, day and night.

What the newborn screening found

Newborn screening is a public health program in every U.S. state. A health professional takes a few drops of blood from the baby’s heel, and the dried sample goes to the state’s lab, according to the Centers for Disease Control and Prevention. The agency says early identification and intervention are key to the program’s success.

For Aurora, the screen flagged MCAD deficiency. MedlinePlus, the National Library of Medicine’s health information site, describes it as an inherited condition that stops the body from converting certain fats into energy, especially during fasting. Symptoms usually appear in infancy or early childhood and include vomiting, lethargy and low blood sugar. The estimated incidence in the United States is 1 in 17,000 people. Fasting and illnesses such as viral infections can bring on problems, and serious complications can include seizures, breathing difficulties, liver problems and coma, which is why a diagnosis made in the first days of life matters so much.

Howell said that when the diagnosis came, she had not realized it was that serious.

Amber Wright, a pediatric hospitalist at Eastern Idaho Regional Medical Center, explained the condition to the news site. The main goal, she said, is preventing low blood sugar, so babies must be fed every couple of hours. Wright said she cannot speak highly enough of the importance of newborn screening.

Alarms, feeds and an emergency plan

That feeding schedule now shapes the Howells’ days and nights. The parents set alarms so Aurora eats on time, and Howell said missed feeds could cause a dangerous crash.

The North Carolina Department of Health and Human Services, in a fact sheet for providers, advises feeding infants with suspected MCAD deficiency every two to three hours, including overnight. It says illness calls for contact with the metabolic team and that a lethargic baby who is not feeding well should be assessed right away. The fact sheet adds that with early diagnosis and treatment, people with MCAD deficiency will live a healthy life.

The Howells’ alarms follow that same rhythm. The University of Utah Metabolic Genetics Clinic wrote an emergency protocol for Aurora, and she has already been to the emergency room twice. She will need lifelong appointments at Primary Children’s Hospital.

Her mother’s lungs and the road ahead

Howell’s own health is better than doctors expected after the birth, according to the report, but she will eventually need a double lung transplant. Jasen Howell, who was on family medical leave, was due to return to work the following week, according to the report. An online fundraiser has helped the family with costs.

“She is a fighter,” he said of his wife. For now, the family’s focus is on getting Aurora through each feeding, one alarm at a time, while her mother’s lungs hold up better than anyone predicted.

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This article was produced with AI assistance and edited for accuracy against the sources linked above.

Image: TheUnaverageJoe – CC BY-SA 4.0/Wikimedia Commons