Barbara Keith and her husband, Ian, wear T-shirts from their nonprofit, Joan’s Reach, which provides educational materials and care packages to doctors to support families who receive difficult diagnoses in times of pregnancy. Seven years ago, the couple lost their daughter, Joan, and have since used their experiences to help others who babies receive terminal diagnoses. Photo courtesy of Barbara Keith

Barbara Keith and her husband, Ian, wear T-shirts from their nonprofit, Joan’s Reach, which provides educational materials and care packages to doctors to support families who receive difficult diagnoses in times of pregnancy. Seven years ago, the couple lost their daughter, Joan, and have since used their experiences to help others who babies receive terminal diagnoses. Photo courtesy of Barbara Keith

By Dubravka Kolumbic-Cortese | Correspondent

It is difficult enough to lose a child, but receiving a terminal diagnosis for your unborn child can result in an unprecedented sense of grief. Advancements in prenatal testing mean more families are dealing with the realization that their unborn child may not live long outside the womb, if at all.

Only recently have perinatal hospice and palliative care support groups been made available to help families navigate through this difficult time, providing medical, emotional and spiritual support, beginning with diagnosis and through the child’s death. Perinatal hospice is a model of care that begins during pregnancy and, along with palliative care, provides families with a compassionate means of celebrating the gift of their child and honoring their child’s life, however brief.

Barbara Keith and her family know all too well how difficult that can be. Keith, a lifelong member of St. Mary Parish, Middletown, and her husband, Ian, were given the devastating news halfway through her pregnancy in 2011 that their unborn daughter had Trisomy 18, a rare chromosome disorder. The Keiths were told that their baby, Joan, would likely not survive and that perhaps they should consider an abortion.

That was never an option, as the couple was determined “to continue to carry and care for Joan until her natural death in whatever time God decided,” Barbara Keith said.

The Value of Life

Keith admitted that the couple received little to no healthcare guidance once they decided to proceed with the pregnancy and birth. 

“Most healthcare providers we encountered had never heard of perinatal hospice care,” she said. “Some doctors seemed to minimize the value of our unborn baby’s life once she was diagnosed with a chromosome disorder that causes profound mental and physical challenges.”

But the Keiths never wavered in their decision to see the pregnancy through.

“Despite the initial shock of the diagnosis and the desire for the anguish to end, I knew that termination would not take away the pain, but only make it worse,” Keith said.

“Once we heard about perinatal hospice, it felt like a big weight was lifted,” she continued. “We wanted to be able to be parents to our child. For us, that meant providing for her, even if it was only going to be for a short time.” 

Unfortunately, the baby died while Keith was in her ninth month of pregnancy. She was induced and gave birth to Joan, giving the couple a chance to fulfill their wish of holding their daughter and seeing her face. It was cathartic for the Keiths, who also found a charitable organization that takes sensitive photos of infants in such situations. It was a way for them to create memories of their daughter, memories they could share with the two children they’ve since been blessed with.

The missed memories are what make losing a child even more difficult, Keith said. “You’re not only grieving the loss of the person that’s close to you,” she said. “You’re grieving for all the memories you won’t get to have with them, all the different milestones you’ll miss.”

Joan would have been seven this year.

“By creating memories while I was pregnant with her, and creating memories when she was born, it gives us something to hold on to, just like you would rely on the memories of your other loved ones when they pass away,” Keith said.

 A Much-Needed Ministry

Keith said she was shocked at how she and her husband’s decision to not terminate the pregnancy was more of an oddity than the norm.

“I couldn’t stop thinking about the parents who might make a rushed decision to end their pregnancy, while still in a state of shock and despair,” she said, “or worse, follow a doctor’s recommendation not knowing that there was support for carrying to term.”

As a result, they started Joan’s Reach, a nonprofit that provides educational materials and care packages to doctors that can give families information on their options and support during this difficult time.

The goal, Keith said, is to make such care standard in hospitals, to have teams of professionals available to guide families through difficult pregnancies.

“I always knew Joan’s life had a profound purpose,” Keith said. “She guides me every step of the way with Joan’s Reach. I am told often how needed this ministry is.”

“We both felt that Joan was with us for a reason,” she continued, “and we would do our best to provide for her unique needs for as long as she was with us, even if that meant giving her a brief life full of love and a peaceful natural death. Joan’s life was entrusted to us as her parents. It was not for us to decide when and how Joan’s life would end. Our purpose was to love, comfort and care for Joan until that day came. We faced different challenges than most new parents, but we loved our child just the same.”