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n talking to my wife Janet, (the actual baby carrier in this family), she points out the following:

First, ultrasounds have been wrong.

Second, miracles happen sometimes.

Third, and most salient here: every baby she has had is dying.  The question is simply, when?  Most of them, God willing, will die in 50 to 70 years.  But they could die in five minutes.

In contrast, the unspoken contract, it seems to me, of much of our culture is that the baby is there for the sake of the parents and if the baby is not Perfect, then the parents have the right to break the deal.  Speaking of playing God….

Finally, as a Catholic I would note that, if aborted, a baby has no access to the sacrament of Baptism.  We can, of course, still entrust unbaptized babies to the mercy and love of God, but I would not be able to look God in the eye and tell him I denied my baby the sacrament because my feelings were more important than his eternal welfare.

These are all things I would say to myself if I were weighing the matter.  They

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering?

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.

Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.

Courtesy of Deibert family Robbie Deibert, the day he was born.

“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”

He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.

"Robbie taught us to love what we have, when we have it, because time is measured," Steve said in the eulogy he delivered at his son's funeral. "Robbie has taught us to hold on tight — and to let go."

Families of unborn infants receiving a diagnosis of HPE

Families of newborns diagnosed with HPE at birth

Families of infants with delay in diagnosis of HPE

Families of children with a diagnosis of HPE

Families of adults with a diagnosis of HPE

Families grieving the loss of a child with a diagnosis of HPE

But what Dr Mark Cregan is excited about right now is the promise that his discovery could be the start of many more exciting revelations about the potency of breast milk.

He believes that it not only meets all the nutritional needs of a growing infant but contains key markers that guide his or her development into adulthood.

“We already know how breast milk provides for the baby’s nutritional needs, but we are only just beginning to understand that it probably performs many other functions,” says Dr Cregan, a molecular biologist at The University of Western Australia.