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

TRANSCRIPTS:
Perinatal Hospice: A Parents Story
By Miles Eddy
Copyright 2005, Midi Age Productions
(719) 379-0308
Web: www.midiage.com
Email: midiage@fone.net

September 25, 2005

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MILES:
Hospice care is something that most people associate with elderly people, or at least terminally ill adults. But what happens when the life that is ending is still in the womb?

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

MILES:
Janell lives in southern Colorado, and when I spoke with her in May of 2005 she was nine months pregnant! She had learned many months earlier that there was a serious problem with her unborn son.

JANELL:
We went to Denver and saw a couple of specialists and they did a specialized ultrasound on the baby’s heart and determined he had HLHS, which is Hypoplastic Left Heart Syndrome. It’s when the left ventricle of the heart, due to a genetic abnormality, does not grow.

With HLHS there’s three choices that they gave us. 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:
Janell also had to weigh the affect 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 health and able then we’ll discharge from the hospital and go under Hospice care.

MILES:
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:
This hospice nurse is experiencing not only a hospice experience, but a grand mothers experience and so there’s quit a journey here.

MILES:
In making decisions, consideration was also given to their unborn son.

JANELL:
We wanted to know the hard-core details of what our little guy would be going through. Because in our opinion, if we weren’t willing to go through what we would be putting him through, how could we expect him to go through it himself. And for some, the thought of losing a child, after you put so much effort and time and money into it and then you still lose them and you sacrificed your family in the process is an overwhelming prospect.

LOIS:
Because we don’t know if this child would survive surgery or not. So are you willing to sacrifice what you know for what you don’t know, and that’s a pretty profound decision to have to make.

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:
They’re pretty young. How much have you told them and how much do you thing they understand?

JANELL:
Kids are amazing and they actually probably comprehend more than most people give them credit for. We have minimized the baby thing significantly since we have found out that we would be losing him. And so we’ve switched from me having a baby to the fact I’m having an angle, and it seems to be a really good transition for them, and they seem to accept that distinction that we’re having an angle.

LOIS:
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 soul 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:
When you’re faced with the prospect of your child being around a few days, 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.

LOIS:
By talking about it openly and freely, it’s also part of a healing process. It’s part of the processes of knowing that this little soul is going to make a difference.

JANELL:
Every family is different and everybody has different circumstances and every choice is the right choice for a family. Our story will help other realize that they’re not alone if they’ve been down this path because I don’t what it to be a “my” story. But I want it to be a parent’s story of a journey that all of us hope that will never have to travel down, or will never have to travel down again.

MILES:
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.

Reporting from Alamosa Colorado, with thanks to KRCC community radio in Colorado Springs, this is Miles Eddy.

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