Diane Steenbeke was 28 weeks pregnant when her unborn son was diagnosed with a fatal skeletal disorder.
Doctors warned that her baby would likely be born with short limbs, wide-spaced eyes and underdeveloped lungs that would cause respiratory failure within minutes. The official diagnosis was thanatophoric dysplasia, which roughly translates to “death bearing” dysplasia in Greek.
A few weeks later, Diane gave birth to her son, Samuel, who lived less than 30 minutes outside the womb. But those minutes, when they were able to hold and look at him, were essential to the grieving process, said Janice Steenbeke, Diane’s mother.
Janice Steenbeke, of Boscawen, fears a bill passed in late February by the N.H. House, dubbed the “Born Alive Infant Protection Act,” might take those limited minutes away from other families dealing with a similar loss.
The bill, HB 233, requires that health care providers take “all medically appropriate and reasonable actions to the preserve the life and health” of a newborn infant. Proponents of the bill argue it respects the life of infants, especially those who are born via late-term abortions. Critics fear this legislation would interfere with the grieving process for families of fatally ill newborns.
Oge Young, a doctor in Concord, recently wrote an op-ed for the Monitor, arguing that the bill would force physicians to take unviable babies away from their families.
“Most women just want to hold, comfort, and care for their infant, sharing their final moments together,” he wrote. “This time is often spent making memories that give them peace.”
Advocates from the ACLU-NH have also argued the bill inserts politics into a difficult decision that should be made by parents and doctors.
Despite pushback, the bill advanced from the House after Democrats left the chamber in protest and the house speaker locked them out, easily allowing Republicans to get a two-thirds majority.
During the 30 minutes in which Samuel was alive, Janice said the whole family was able to spend time with the baby without worry of invasive or expensive medical procedures.
Under the bill’s definition, Samuel was born alive — he had a beating heart, he could move his muscles. But the family didn’t want him to spend his only minutes alive under tubes, needlessly prolonging a life that would inevitably end when they left the hospital.
Instead, they focused on memorializing him. Nurses made ink footprints. Janice baptized him under the hospital room sink. They took photos with him swaddled tightly in a blanket.
They later buried him beneath a black, granite headstone in Boston, beside where Janice and her husband will one day be buried.
Though Samuel was born more than 20 years ago, Janice still keeps many of his mementos in a cabinet. She sends flowers every year to commemorate his birthday.
“I can’t imagine knowing that you’re carrying a child that’s not going to live,” Janice said. “We chose to go through with the pregnancy and do what we could do and mourn the loss of the baby. Don’t tell me you’re going to take this child and try to save it when it’s not possible.”