Samuel was born on Jan. 1, 2012, and lived for 4 hours and 58 minutes. I tread lightly in relating this, because Samuel's story is beautiful and sacred.
Still, Samuel's story must be told and understood because it demonstrates the inhospitality of many in the medical profession toward unborn children with conditions they consider "incompatible with life."
Parents who have just received the devastating news that their child has a significantly life-limiting condition are left floundering with no real options.
The experience of Samuel's parents illustrates the significant need for state legislation ensuring that others won't be abandoned without the information they need to make fully informed decisions regarding the lives of their unborn children.
Months before Samuel's birth, doctors diagnosed him with Trisomy 18. Friendship with Samuel's parents, Aaron Cobb, an assistant professor of philosophy at Auburn University at Montgomery, Ala., and his wife, Alisha, gave me a unique look at Samuel's life.
Aaron said that the specialists who diagnosed Samuel offered two options: Do something — terminate the pregnancy — or do nothing and "endure" the pregnancy with no assistance other than the support they sought out through their own initiatives.
He explained: "The very first question we were asked was whether we would terminate the pregnancy. We were not asked whether we wanted to learn more about Trisomy 18, whether we would like to talk with our family and community about what care for a child with Trisomy 18 would involve, whether we would like to be put in contact with a support group for parents who have experience with Trisomy 18. When we indicated that our answer to this question was "no," the physician then said that there was nothing more they could do for us."
But instead of going along with the medical community's "default" option of termination, Aaron and Alisha sought out support through their own initiative. Their own obstetrician scheduled weekly appointments with them, allowing them to observe and experience Samuel's life.
They worked to create a birth plan that allowed them as much time as possible to hold and cherish Samuel, to look into his beautiful eyes, to share him with their friends, and to hear and record his voice.
In other words, the Cobbs crafted for themselves what is known as a "perinatal hospice" experience — an extension of the hospice movement, which provides compassionate support for families beginning as soon as they receive a diagnosis that their child has a significantly life-limiting condition.
Such care includes a multidisciplinary approach involving the combined efforts of doctors, specialists, nurses and counselors. After birth, this team makes careful provisions to meet the specific needs of the child and family, to allow the family optimum time with the child.
The Cobbs' experience demonstrates one of the greatest legislative and medical voids in the United States today: the absence of protocols requiring that physicians provide real options — like information about perinatal hospice — to parents presented with a life-limiting prenatal diagnosis.
Instead, parents are basically abandoned as the medical community parrots the view that the only or best option for them is to terminate the pregnancy. As Aaron explains, the medical community's pressure to abort leaves parents feeling that their child is expendable and should be thrown away.
Unlike the Cobbs, 80 percent of parents in this position choose to abort, most without ever knowing that perinatal hospice exists. That must change.
States, as regulators of the medical profession, can ensure that parents like the Cobbs are not left to carve out their own path, "reinventing the wheel" when real perinatal hospice options are available, but unknown to them.
States can ensure that parents receive compassionate options that don't present them with the false choice of "abortion or nothing."
Today, only three states — Arizona, Kansas and Minnesota — require that parents receive information about perinatal hospice in the context of informed consent before abortion. Oklahoma is seriously considering a perinatal hospice bill in 2014.
Such legislation should not be controversial. If the pro-choice mantra that abortion should be "safe, legal and rare" contains even the slimmest amount of sincerity, legislation requiring physicians to provide information on perinatal hospice should find bipartisan support.
After all, studies demonstrate that offering perinatal hospice options would indeed make later-term abortions more rare.
One recent review of the medical literature details four studies demonstrating that when given the option, a significant number of couples (between 37 percent and 87 percent in the studies analyzed) receiving a life-limiting diagnosis declined abortion and opted instead for "palliative care" (or perinatal hospice) and to continue the pregnancy.
No easy answers exist for grieving parents making plans to meet a child who may die shortly after birth. Legislation cannot change diagnoses. However, legislation can ensure that parents are not pressured into a decision that categorizes their child as expendable.
Such legislation recognizes the humanity of the child and supports the parents who are grappling with this heartbreaking event.
Parents deserve better than the "abortion or nothing" option. Parents deserve to know that, in the midst of their helplessness and inability to control their circumstances, options exist allowing them to take control and affirm the life of their child.
Mailee Smith is staff counsel with Americans United for Life and wrote this article with the permission and participation of Aaron Cobb.