Micro Preemie Ethics

Parent of a medically fragile infant

You can open your eyes. She has been through a lot. She's come a long way, because at first, the statistics aren't very good with high drops babies. But she made it through that, and now she's just growing, waiting for her heart surgery to have a shunt put in here in a few weeks. And how do you feel about

Betty Rollin

all of this?

Parent of a medically fragile infant

It's very tough to see your child

Parent of a medically fragile infant

At any point,

Betty Rollin

if you knew how sick she was, would you have let her go?

Parent of a medically fragile infant

No. No. No. Because? I feel like she's a miracle. What's a miracle?

Parent of a medically fragile infant

I feel like she's perfect.

Parent of a medically fragile infant

Oh, oh, bless you.

Betty Rollin

Two weeks ago, Jasper, who is now three months old and has a rare genetic disease, was near death but survived. He is going home soon, but his future health is uncertain.

Parent of infant Jasper

He has a heart condition. He has a murmur, but it's slowly closing with the G tube. They're thinking that maybe another five, six months, we'll do another feed study. But until then, he can't have anything by mouth.

Betty Rollin

For both of these mothers, who knew how sick their babies were before birth, abortion was not an option.

Parent of infant Jasper

I just have always had strong beliefs against, you know, people who, if it's not a perfect child, you know, they would abort. And to me, Jasper is perfect.

Betty Rollin

What if he winds up for a good portion of his life very sick? How will you feel then?

Parent of infant Jasper

I will be the mother that he deserves. I will be by his side through the whole thing like I have been. We all know that he's a little miracle and we wouldn't change anything about him.

Betty Rollin

Both the survival and health of these babies have a lot to do with how premature they were at birth. Dr. John Lantos is both a pediatrician and ethicist at the hospital.

Dr. John Lantos

In 23 weeks, about half of babies die. 24 weeks, maybe 30% of babies die with some variation by race, gender, and center. And the big question today is, of the survivors, how many survive without devastating neurologic impairments or other chronic medical problems?

Betty Rollin

Problems like brain damage, cerebral palsy, Down syndrome.

Betty Rollin

Karen Dow was born at 26 weeks, weighing one pound, 12 ounces. She has severe bowel and digestive problems and already has had one surgery and will soon have another.

Mixed reporter-question and family-interview fragments

What's been the hardest part of all of this?

Betty Rollin

Seeing her have to go through this and not being able to cover her. One of the torments for both parents and doctors is the question of how much the treatment itself is contributing to the baby's pain and suffering.

Dr. John Lantos

Sick babies in the NICU get between 10 and 20 painful invasive procedures per day. Needle sticks, shots of various things, new IVs need to get started, suctioning of their endotracheal tube. Narcotics themselves have risks. So it's a tightrope walk how much pain medicine to give in order to minimize the pain and suffering without causing more harm from the medication that's being used to treat the pain.

Betty Rollin

In most cases, the babies treated here will go home healthy and stay that way. But when the outcome is uncertain, the medical staff sees the choice of whether to treat as both a medical and ethical issue shared by the physicians and the family. But it is the family, usually the mother, who makes the ultimate choice. Dr. Brian Carter is a neonatologist and ethicist.

Dr. Brian Carter

I think personally the most difficult experiences have been those in which I can foresee a child suffering and a parent not really understand that the condition is fraught with suffering and insist upon treatments which are no longer treatments.

Betty Rollin

So what do you do in that situation?

Dr. Brian Carter

In that situation we talk about benefit And what's the usual outcome of that conversation? The usual outcome is the need for another conversation.

Betty Rollin

And what of cost? It varies, but for infants born at 25 weeks who spend an average of three months in intensive care, the total cost can run as high as $900,000. And usually there are medical costs after the baby is discharged. You had a busy day today. A very busy day. Religion often plays a role with both the parents and the doctors. God

Mixed reporter-question and family-interview fragments

and I had some very serious conversations. In the sense that it wasn't that I doubted him, I was calling on him to do what I know he could do.

Mixed neonatologist and family-interview fragments

I can cry out to God about them, and I do pray and talk to God about my bad days, believe me. I won't pretend to know absolutely the will of God.

Becky Krause

Well, I just wondered if you'd like a prayer before you head out. I'm just going to touch your bed, Jasper, and

Betty Rollin

pray over you. The Children's Mercy Hospital's neonatal intensive care unit also has a full-time chaplain, Becky Krause.

Becky Krause

My goal is to meet people where they are when they come here. And so sometimes that prayer takes the form of just getting them a cup of water Kleenex if all they can do is cry and just standing silently and so much is just our presence.

Betty Rollin

Chaplain Krause finds that religious parents who were expecting a healthy baby are sometimes angry

Becky Krause

at God. Anger is a good emotion and to help them be able to channel that anger into, you know, voicing it. One of the things that I do personally and I recommend to parents is journaling. because it's a proven way to kind of help release those kind of feelings and just to normalize it to say it's okay to be very angry.

Betty Rollin

Both religious and spiritual support are given to the families of babies who die. Rachel Courtney knew that her baby Jack would have a short life but wanted it to be meaningful.

Rachel Courtney

He lived for three and a half days and the whole time we just held him and he was cuddled in our arms and we read to him and sang to him. All of our family and friends came in. There was no limitations on how many people or how much time they could spend.

Betty Rollin

Babies who have died are memorialized on a quilt and Children's Mercy Hospital continues to reach out to the parents. Doctors say the technology of treating very sick infants will continue to improve with a focus on genetic screening and fetal surgery. But with the improvements, the ethical questions may increase.

Rachel Courtney

For

Betty Rollin

Religion and Ethics News Weekly, I'm Betty Rollin in Kansas City, Missouri.