Transcript for the Piece Audio version of A Parents Story of Perinatal Hospice

MILES EDDY:
Janell, who doesn't want to use her last name, lives in southern Colorado. Last spring she was an expectant mother.

JANELL:
I'm Janell. We're expecting our third child who is born with a fatal heart defect.

MILES:
Janell and her husband went to Denver, where specialists told them that their unborn child had a genetic condition called Hypoplastic Left Heart Syndrome, which prevents the heart from working normally.

JANELL:
The first choice they gave us was hospice care, or comfort care for him. The second choice was a heart transplant, and the third choice was an experimental surgery, it's called the Norwood operation. The pros and the cons for the heart transplant were that he would be at Children's Hospital probably a minimum of 6 months in Denver waiting for a heart. And then we would have to live there, in Denver, an additional six months while they dealt with his medications.

MILES:
Most parents say, and mean, that they will do anything to save the life of their child, no matter what the cost. But when it comes to medicine, the choices aren't always black and white. Dr. John Burrington is a retired Colorado Springs surgeon and a founder of the Forum of Perinatal and Neonatal Ethical Issues, which was held in the Springs last May.

DR. JOHN BURRINGTON:
I think television has popularized things like "at all cost" and so on. It?s sort of a knee-jerk type response to "do you want to intervene" and they have no concept of what at-all-cost means. Do you mean you want us to innervate him and leave him on a ventilator the rest of his life? Do you mean you want to have him have I.V. sticks every four hours for the rest of his life? Un-bundle the term "at all cost" and sit down with him and say specifically "do you want this, do you want that, do you want the other" and I think it cases them to focus on what the term means in terms of hour-to-hour existence of their child.

MILES:
Janell had to weigh the effect of trying to save her third child on the two daughters she already has.

JANELL:
Our oldest with be four and our youngest just turned two. The specialists, some of the surgeons we spoke with at Children's [Hospital] did mention that there has been some resent research showing the long term psychological impact of sick children being brought home to siblings, or to the family unit and when you bring home a sick child, the whole world as they know it ceases to exist because everything revolves around the sick child. So that was a decision that we had to make regarding our girls.

MILES:
Janell made the wrenching decision to go ahead and give birth to her son, but not to try and correct his terminal heart defect.

JANELL:
As soon as I'm healthy and able then we'll discharge from the hospital and go under Hospice care.

MILES:
Hospice care is something that most people associate with elderly people, or at least terminally ill adults. But every year thousands of families find themselves in situations like Janell?s, says Registered Nurse Annette LeBel, the Perinatal Loss Coordinator at the University of Colorado Hospital in Denver.

ANNETTE LEBEL:
There's tremendous need. Families will come in and get a diagnosis and they have few options and one is to terminate or to carry the baby to term, and if they carry the baby to term there's no support in-between the diagnosis and the delivery and they have no idea what's going to happen at delivery and what this will do is help with participatory grieving and support through the rest of their pregnancy and make a plan for the actual birth, delivery, and death of their baby.

MILES:
Annette, along with Nancy English, the Palliative Care Nurse at The Children's Hospital in Denver, are team members from the Fetal Concerns Program.

The support of Janell's family is also important to her, and as it turns out, her mother Lois Booth not only lives close by, but also is the Executive Director of the local hospice.

LOIS BOOTH:
I think there's a lot of resolution that has to come in the terms of our own spirituality and if we're comfortable with this little sole returning again to God, which is what we believe. And so, if we're able to allow that, then death doesn't because as monumental.

MILES:
Despite the difficult situation, Janell and her family aspire to find meaning.

JANELL:
You have to wonder what impact he can leave on the world, and we learned that because infants are so small they are not considered candidates for tissue donation. And then we looked into developing resources and information to families who are, or going to, or have suffered the loss of a small child.

MILES:
Janell and her husband wanted their daughters to know, that despite the shortness of his life, their brother was important.

JANELL:
We wanted to have the family pictures and the album and the mementos so that they could look back and realize that they had a baby brother and that he wasn?t swept under the carpet or that he was not acknowledged. He was a very loved, appreciated addition to our family, so that they have some closure and not the secrecy that unfortunately, decades ago is was what was associated with the lost of a child.

MILES EDDY:
On May 20th, 2005, Janell had an eight-pound three-ounce baby boy. She took him home one day later where she and her family were able to spend time with him, take photos, and say goodbye. He died at home, 46 hours after birth, in his father?s arms.

The Fetal Concerns Program in Denver provides comprehensive care and support when pregnancy is complicated by concerns of fetal abnormalities. For more information, contact Nancy English at The Children's Hospital at 303-864-5548, or Annette LeBel at 303-372-4021.

Reporting from Alamosa, Colorado, this is Miles Eddy.