TARA REED, mother of Ella Reed: She has been through a lot. She has come a long way because at first, the statistics aren't very good with Hydrops babies. She made it through that, and now she is just growing, waiting for her heart surgery. So she will have a shunt put in here in a few weeks.

BETTY ROLLIN, correspondent: And how do you feel about all of this?

REED: It's very, it's very tough to see your child struggle.

ROLLIN: At any point, if you knew how sick she was, would you have let her go?

Micro-Preemies-post01REED: No, no.

ROLLIN: Because?

REED: Well, I feel like she is a miracle.

ROLLIN: What's the miracle?

REED: I feel like she's perfect.

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.

ANGELA MAYHEW: He has a heart condition, he has a murmur, but it's slowly closing. With the G-tube, they are thinking maybe 5-6 months will do another feed study, but until then, he can't have anything by mouth.

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

MAYHEW: I've just 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.

Micro-Preemies-post02ROLLIN: What if he winds up for a good portion of his life very sick? How will you feel then?

MAYHEW: 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 the little miracle, and we wouldn't change anything about him.

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, Director of Pediatric Bioethics, Children’s Mercy Hospital: Twenty-three weeks—about half of babies die. Twenty-four weeks, maybe 30 percent of babies die, with some variation by race, gender, and center the big question today is, of the survivors, how many survive without devastating neurologic impairments or other chronic medical problems?

ROLLIN: Problems like brain damage, cerebral palsy, Down Syndrome. Karen Dowe was born at 26 weeks weighing 1 pound 12 ounces. She has severe bowel and digestive problems and already has had one surgery and will soon have another.

(to Pearl Dowe): And what’s been the hardest part of this?

Micro-Preemies-post03PEARL DOWE: Seeing her have to go through all this and not being able to comfort her.

ROLLIN: 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. LANTOS: Sick babies in the NICU get between 10 and 20 painful, invasive procedures per day. Needle sticks, shots for 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.

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, Neonatologist and Pediatric Bioethicist, Children’s Mercy Hospital: 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 insists upon treatments which are no longer treatments; they’re merely painful interventions.

Micro-Preemies-post04ROLLIN: So what do you do in that situation?

DR. CARTER: In that situation we talk about benefit and risk.

ROLLIN: And what’s the usual outcome of that conversation?

DR. CARTER: The usual outcome is the need for another conversation.

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 could run as high as $900,000. And usually there are medical costs after the baby is discharged.

Religion often plays a role with both the patients and the doctors.

PEARL DOWE: God and I had some very serious conversations. In a sense it wasn't that I doubted Him, I was calling on Him to do what I know He could do.

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

ROLLIN: The Children’s Mercy Hospital’s Neonatal Intensive Care Unit also has a fulltime chaplain, Becky Crouse.

Micro-Preemies-post05CHAPLAIN BECKY CROUSE: 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.

ROLLIN: Chaplain Crouse finds that religious parents who were expecting a healthy baby are sometimes angry at God.

CHAPLAIN CROUSE: 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.

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.

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.

For Religion & Ethics NewsWeekly, I’m Betty Rollin in Kansas City, Missouri.

Micro Preemie Ethics

Technology has allowed premature and critically ill newborn babies to survive, but sometimes with major problems. Families, doctors, and chaplains must now face issues of life and death. “The big question today,” observes Dr. John Lantos, a pediatric bioethicist at Children’s Mercy Hospital in Kansas City, “is, of the survivors, how many survive without devastating neurologic impairments or other chronic medical problems?”

  • alltoohuman

    This is a tough issue emotionally. (I have been through this.) We are programmed by evolution to reproduce at any cost, however irrational and even inhumane that is. The only way to deal with these situations is to think deeply before they occur so a decision can be as ready-made as possible based on reason and compassion. Only then can a person be strong enough to overcome the natural emotional drive to save life at all costs. If we don’t do this, we consign very sick babies to awful suffering just to alleviate our emotional pain. The babies deserve better. If we say we love them, do the right thing by them and let them go in peace. Do for them what you would want done for you. How many of us would choose to be born into a life of pain and suffering. A woman is capable of having many children. If she plans to bring only one, two or three into the world, shouldn’t she do her best to bring in those who are as healthy as possible? For their sakes? If she loves them enough to suffer the emotional pain of letting the sick little ones go?

  • May Hilliard

    A friend was a nurse who worked with babies they expected to be critically ill babies–for about 8 years, till she could take it no longer. She said of the babies born in such a conditions, 1/3 were treated and were just fine. 1/3 were saved and went on to lives with problems, but manageable. The last 1/3, she said, they should have let die. Those children would have handicaps, pain, and utterly horrible lives. She felt it not fair to let them live. They were doing these children no favor at all. She kept a picture of all of ”her babies”, and it was a huge stack.

  • sister chemist

    My best friend was a pediatrician. She loved children, but she told me when she first started her practice in about 1960 she said that if a premie was born, they did not do any extraordinary method to keep it alive because of all the birth defects that the child might have. They just told the mother the baby died at birth. She loved children, but she herself never married and told me if she adopted a child it would have to be perfect e.g. smart.

  • Jennifer

    I could never fight to keep my baby alive if he was going to have a lifetime of disability, pain, and heartache. To me, this is all too cruel. It is not fair to the child to make him suffer thruout life.

  • Jennifer

    I could never fight to keep my baby alive if he was going to have a lifetime of disability, pain, and heartache. To me, this is all too cruel. It is not fair to the child to make him suffer thruout life.

  • Jennifer

    I could never fight to keep my baby alive if he was going to have a lifetime of disability, pain, and heartache. To me, this is all too cruel. It is not fair to the child to make him suffer thruout life.

  • Amy Hedquist

    As the mother of a 24 weeker I must emphasize that the real problem is not letting the critically ill infant die, it’s that you can’t predict who is temporarily critically ill and who will be permanently critically ill. My daughter weighed 1lb 10oz and was in the NICU for four months. She is now 7 and unless you were very familiar with minor preemie issues (which are pretty much indistinguishable from any child’s potential issues) you would not know she was a preemie. During the drama of my last few weeks of pregnancy we were both subtly and overtly encouraged by some of our doctors to cut bait and bail – which at the time seemed like a reasonable option even to me. When I think of what we would have done had we taken their advice I shudder. We would have snuffed out a survivor. 1/3 of these children come out of it with no severe consequences, 1/3 with moderate problems. People who say with great compassion that they wouldn’t let a baby suffer don’t seem to understand that they don’t come labeled “Unscathed Survivor” or “Severely Disabled’ and even a wild and long ride through the NICU won’t tell you which one they will be. And do not glibly underestimate unless you have been faced with it – letting them die doesn’t mean handing the leash to the vet while you have a good cry on the drive home. It means holding your own child and looking in her eyes while she and all her hopes asphyxiates in your arms. Perhaps this is an issue that truly should be left to those who actually have to live through it.

  • Melanie

    As someone who wants to go into pediatric or neonatal nursing, this was very heart-wrenching but crucial to watch. The families of these beautiful children must be supported through the financial and emotional distress that accompanies having a premature baby, and the hospital should never waver in providing options to these families and allowing them to feel completely a part of their baby’s care.

  • Linda Goodwin Gonzalez

    I had a 24 weeker, and lost friends over my choice to keep him alive. He almost passed 3 times, but is now 4 years old and has NO problems whatsoever. Thank you for your comment. I wished more people would look past the the right now and think of the what could be when it comes to the micros. I know my boy is a miracle.

  • Jennifer Ward

    I am the proud mother of a 23 weeker I do think the choice should be that of the family. My daughter was kicking the daylights out of me during the neonatal consult and I just knew somehow that she could do it and made thw choice to fight for her. It’s easy to say what you could or could not do till you are actually faced with that decision. She came Into the world a whopping 1 lb 13 oz (quite big for her gestational age) with her eyes still sealed and he umbilical cord in true knots from swimming through it in my stomach. She was tiney but fierce from the start, she cried 3 times and kicked a nurse before they got her intibated. We spent just under 4 months in the NICU. She turns two this summer and only has a few delays in speech and motor skills that her therapists and doctors think she will over come as she is making great progress. My daughter is the strongest person I know, she is so full of life and joy that I do not doubt for one moment that we made the right choice.

  • hunch

    That is truly a dum and a heart less person

  • ahhh

    Do have a child have u been in the situation if no shhhh and keep heart less commits to self

  • Tarin Chartier

    My miracle was born at 29 weeks, but had not grown since 25 weeks, they were trying everything to keep him in and help him grow and nothing was working. He is now 20 months old and doing much better, he has a rare liver disease, Autism, and Sensory Processing Disorder, but to me and the people who know, he is perfect and a miracle. I was never told, until I was 25 weeks along that something may be wrong. It started with them noticing he was small, then constant monitoring. He only gained 4 more ounces since than and was born weighing 1 pound 11 ounces. He has overcome a brain bleed, heart murmur, sepsis, dress syndrome (allergic to live saving antibiotics at birth), almost complete organ failure and one day, with the help of my milk supply, started to get better. These babies are worth saving and truly show the world that miracles can happen. I know more full term babies that have health issues than I know of preemies, regardless of that, it does not matter, if there is a chance of survival it should be respected and the parents should make the choice.

  • Iris Leiker

    There’s no way to know for certain if the child is going to have a “lifetime of disability, pain, and heartache.” The doctors never told me the prognosis of my kid. They assumed she was going to die within first week or two. She didn’t. She 4.5 Yrs old. We just got back from the same hospital of the doctor who wrote this article. She had to have her 2nd outpatient eye surgery. She far from blind. But with her “disability” and her “pain” from an occasional surgery should I have opted to let her die? That’s ludicrous. You should speak about the matter and if it is or isn’t cruel when you deal with it yourself.

  • Edna

    This was a real child. He was born early and they knew from the very first that he had very bad problems. He lived and never had the mentality of an 18mo. old——-if even that. He never talked and only grunted. He had to be fed his whole life, wore diapers and loose dresses to reach them easily, and spent his days putting rocks in a can, dumping them, and doing the same thing over and over all day long. The rest of the family could not have decent lives-the other children were embarrassed to have friends over because of his looks and because company upset him and he’d go into screaming fits. Back when he was born, there were no homes for such children. His father died and his mother later could not handle him as he was much bigger than her and his fighting fits were dangerous to her. This was years later, as he reached his 60s. They had to put him in a ”home” before he hurt his mother. He died when he was mid 70s. This child they should have worked very hard to keep him alive? Oh-he was in my family.

  • Shelby

    My little one was a 23 weeker and 7 month hospital stay. She was trached, I was told would have cp and constantly told by doctors and family that I need to pull the plug. As the months passed in the hospital, it got worse. The worse was her throwing up liters of blood for 5 days. She had over 60 blood transfusions in the first 3 days. Now, she’s 18 months old and no signs of c.p. and we just got her trach out! I believe we need to give these little ones a chance….

    I agree, they go through pain and it’s hell for both parties. I’ve witnessed so many things happen to my daughter, it’s crazy. However, she doesn’t remember. Now she is the happiest little baby ever and I’ve never regretted my decision to save her. I’ll never have to go through life thinking what if.

  • Katherine Skulmoski

    I have a 25 weeker. He almost died from a blood disorder at two weeks. He was in the hospital for 96 days. He was CLD, and speech delay. He is now almost three. He has been in speech therapy for almost a year and makes leaps and bounds all the time. You can see his little brain working, always thinking. Too soon to determine if he has any other diagnosis. He is a lovable little boy, and I feel that if I gave up on him back when he was two weeks, I wouldn’t be half the person I am today. When your in the hospital, you never think “I will take home a disabled child.” I know myself, all the preemie mom’s I hung out with, we all thought “Thank God, I can bring my child home.”

  • Micro Friend

    Yours is the most narrow-minded response I could imagine. The world it’s a better place with my friends’ happy, healthy, energetic 3 yr old in it. I could not be more grateful that they didn’t give up on her.

  • Laura Beck

    I am the mom of a 29 weeker who died at 4 days old. Sometimes all the efforts in the world aren’t enough. It’s all chance and luck.

  • Laura Beck

    Even the preemies who don’t make it could be seen as “miracles”. I understand your pride. Even though my son died, I still think he was special and miraculous.

  • Laura Beck

    This is why the whole “my baby is a miracle” for surviving NICU babies bothers me. It’s 1/3 chance. They are all miracles. And just because a baby dies doesn’t mean it’s because they weren’t afforded a miracle. Its doesn’t mean that a surviving baby is anymore meaningful or special or purposeful then a baby that died. It’s truly surprising to me that NICU parents don’t see how that might offend bereaved parents.

  • musicalmom

    I accidentally clicked on the votes 2x. Wasn’t sure what that was, thought I was opening up comments. Ooops! I completely and totally disagree with you. We were given this desire to save life by our Creator. It is a beautiful virtue and one that should never be ignored. It is not our choice to decide who should be saved. It is our duty to save life if it is in our power to do so.

  • Lily

    You could not have written this any any better! As the Mom of a 26 weeker (13 years ago!)…the Mom of a preemie in heaven AND a NICU nurse…you are right. These babies do not come with labels telling us that this one may live and this one may die. Unless you have lived through it, witnessed it, been a part of it, I suggest you keep your opinion quietly to yourself because you have No.Idea! Thank you Amy :)

  • Toni

    Wow your are an uneducated person when it come to nicu babies especially micro premies. Therefore, do not comment on something you know absolutely nothing about.

  • Jolene Bradshaw

    Wow you are extremely hurtful Laura…. No mom thinks their micro preemie is more special than someone else’s. We all go through the battle, and saying its all chance and luck is ridiculous and utterly mean. It is emotional for all of us regardless if the child lives or dies.

  • Jolene Bradshaw

    What is wrong with any mother of a micro preemie saying they are a miracle…? What is wrong with them being proud parents? Should people who go around that can’t have children be bitter at all parents? You are upset that no one thinks they care about your baby. People care they even have a special day at the hospital each year where parents come out and fly ballons to mourn their child. You child is special everyone’s child is a miracle. To even give birth is a miracle many can’t and take that for granted and I get all upset about that.

  • Jennifer Maddox

    I am the mother of a full term infant (38 weeks, one day) from a very typical, very healthy pregnancy. I had a “questionable” nonstress test and after eight hours of doctors ignoring decelerations in heartbeat, my baby was taken via emergency c-section. It was at that point when he was born extremely anemic with over 84% of his own blood lost (through my placenta, into my bloodstream), that they realized he suffered a very rare incident called a fetomaternal hemorrhage, where the placenta essentially reverses, draining his blood into mine. I had no warning signs, and I had a full term 7 pound baby that was delivered as white as a ghost and unable to breathe on his own. I was told he would not make it past 36 hours. They wouldn’t even let me put his name on his bed warmer in the NICU until the fourth day. He went on to spend 16 days in the NICU, and yes, many of them involved needles, and IVs (in his head, even), and procedures, but he survived. And every last one of these babies are miracles, both the ones here on earth and those in Heaven. My son is now ten months old and is already diagnosed with many things, but you wouldn’t know it unless you were a doctor, or therapist, or early childhood special education teacher (which I am). I don’t go around telling people about his deficits; I simply say he has a brain injury from birth. I love my son more than anything on this earth, and as Amy said, we have absolutely no way of knowing what the outcome is going to be…There is no roadmap to the NICU. I also feel as though this video implied wrongdoing on the part of the mothers, or perhaps, that we knew going in that there would be issues with our children. For the vast majority of us, whether it’s mothers who when into labor early, or people like myself, that had a rare and tragic occurrence take place, we had NO time to prepare or think about anything. And I can tell you with wholehearted honesty, I would not have done anything different. My son defied the doctor’s expectations at birth, and he continues to. He is not only a miracle, but a blessing. These babies have a lot to teach US, and perhaps, the people behind this video.

  • mommabear

    There was nothing remotely mean about what laura said. I think u read something else. She didnt even insinuate remotely that she thought any baby is more special than someone elses or tjwt she thought anyone thought that. U may want to reread her comment. She was just saying its all up to chance so u never know which ones will live or die unless u take the chance as she was referring to the topic

  • Jolene Bradshaw

    The post was edited mommabear. i’ll just delete my comment since it makes no sense now lol.

  • alyssa

    It is nice to hear the good outcomes. I had my daughter Sarai 11/22/14. Did amazing up until the last couple of days. Last night took a turn for the worst I thought I lost her. They put her back on the oscillator and they have sedated her because she was fighting to breathe. It’s so scary any advice.

  • Shelby

    My daughter would do amazing and then suddenly need a strong vent. It was random and frustrating for me. She’s been on every vent there is. My advice is to keep strong and demand they run every test possible. Also read to your little one and never cry in front of her! When ever I would break down, I would go into the hall and then come back and put a smile on, let her see that everything is alright, preemies can feel your love :)