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Who Decides? Life-saving Care for Micropreemies

Kangaroo Care with DadWhen Miri’s water broke at 22 weeks and 6 days of gestation, we knew our child was in extreme danger, and we were trying to cling to some hope he might live. The neonatologist who came to talk to us didn’t help with hope.

“At this stage, I don’t recommend that babies should be intubated just because the results are so poor,” he said to us. “If you give birth after midnight — that’s just the line for when we’ll intervene — I’ll be the one who comes and resuscitates the baby, but my heart won’t be fully in it.”

Wait, what? The doctor can just refuse to provide care and leave the baby to die, even though the family wants to try to save him?

Here is one of the most difficult questions in medicine. At the beginning of May, a study came out in the New England Journal of Medicine that explored the differences in care that 22-week preemies receive depending on the hospital at which they are born. Looking at 24 U.S. hospitals in the Neonatal Research Network, the researchers found that 22 percent of 22-week preemies were provided care, and 23 percent of those who received care survived. In the group of 24 hospitals in the study, four hospitals provided no care to any 22-week preemies, and five hospitals provided it to all of the 22-weekers born there.

Being parents of a 22-weeker, our opinions are quite strongly on the side of saying “Yes, you should provide care! Especially when the parents are asking for it!”

Since the birth, I have been researching how these decisions are made, trying to understand this close call we had, and have learned practices vary widely depending on where you are. For example, in Japan, since the 1990s, babies have been routinely resuscitated in the 22nd week, and they have survival rates in the 30-40 percent range. On the other hand is the Netherlands, where babies are typically not resuscitated unless they get to the 25th week of gestation.

In the United States, there is a set of guidelines created by the American Academy of Pediatrics’ National Resuscitation Committee. It states that in most cases, it is appropriate to resuscitate after 25 weeks, but before 23 weeks or if a child weighs less than 400 grams, resuscitation is “not indicated,” which is doctor-speak for “you shouldn’t do it.” That ghastly “not indicated” category is where our child almost ended up.

When Miri was getting close to having Gabriel, the doctors gave us statistics about survival and survival with disabilities of preemies. They told us that 20 percent survive at this stage, and of those, 30 percent survive without moderate to severe disability. These statistics were the main reason we were advised to let him go. And yet, the thing we had to remember is that the statistics are for groups – our one child might decide to live. To cut him off without giving him a chance to live because of what the statistics said about his future seemed quite cruel. Having a doctor say he was going enforce that decision on us was especially offensive.

But then to add to the complication of the “who gets to decide” question are cases of parents in an opposite situation to ours – they did not want their children to receive care, but the doctors insisted upon it, believing they were acting in the best interests of the child. A 23-weeker born in Texas in 1990 was resuscitated against the parents’ wishes and later developed a brain bleed and became severely disabled. The parents sued the hospital for $60 million for battery for providing the care, and the jury agreed with them. In 2003, the Texas Supreme Court overturned the decision, saying that a court should not hold doctors liable for performing life-saving care. Another case involved the father of a 25-weeker in 1994 in Michigan who asked to be left alone with his son in the NICU, who then disconnected his ventilator, resulting in the baby’s death. He was put on trial for manslaughter, but the jury acquitted him.

I don’t know that there is a perfect solution to this dilemma, but I can say that I wish hospitals would be more flexible about preemies born in the 22nd week, and not talk like they are all terminally ill because of their gestational age, nor should they talk about potential disability as a reason to withhold care. We’ve been through early intervention therapy with our son and been amazed at how he, and the other children and their families, have adapted to disabilities and delays. But to parents in the crisis of preterm labor or another condition leading to a premature birth at the edge of viability, these gloomy statistics sound like prison sentences, and can add to their panic and push them in to giving up.

The article in the New England Journal of Medicine I mentioned above was accompanied by an editorial from a British neonatologist, Dr. Neil Marlow, who wrote, “To give crude data on the survival rate among all such infants, regardless of whether treatment efforts were made, is misleading and helps to make poor survival a self-fulfilling prophecy.” He concluded: “Information on survival, morbidity, and policies regarding active intervention should be available to assist parents in making an informed choice about transfer to a specialist hospital, if feasible, and the level of intervention provided after birth.”

I hope these articles encourage some discussion in the medical community to come up with a better approach for micropreemies at the edge of viability. We know that they cannot all be saved, and maybe even most will die at certain stages, but a window of hope should still be open.

Eric Ruthford About Eric Ruthford

Thomas Eric Ruthford (WA) is the father of one child, Gabriel, who was born at 22 weeks and 6 days of gestation, setting a record for most immature survivor to come out of his NICU, the busiest one in the state. Thomas and his wife, Miri, live in Washington state. Thomas was a newspaper reporter in the late 90s, and is now a non-profit manager. He has also served in the U.S. Peace Corps in Ukraine, teaching English as a foreign language. He is working on a book about Gabriel, and how neonatal care developed. You can find him on Twitter @MicroPreemieDad, or his personal blog.

Comments

  1. Great article Eric! Lots of hope for the youngest preemies. Thanks for bringing awareness and prompting discussions about ethics in neonatology.

  2. Great job, Eric! I totally agree. I think most people would be horrified if they knew how much gray area there is between 22 weeks and 24 weeks! I met a woman at my kids’ preschool a few years ago who had twins born at 24 weeks exactly. Had they been born the day before, the doctors told her that they wouldn’t resuscitate, which seemed so arbitrary. It had nothing to do with their health or size, only their gestation (which isn’t an exact science anyway–I had doctors repeatedly give me a due date that I knew was impossible). And, really, what’s the difference in a few hours?! Even more sad was that she didn’t know that two major hospitals (one of which is world famous) were located within five minutes of hers, and both of those hospitals would have delivered her twins at 22 and 23 weeks. It seems awful to me that they had no obligation to tell her that they could transfer her! I definitely think the 24-week cut-off is arbitrary and antiquated. Thank you for sharing.

  3. So in Japan your survival rates of 30-40% are actually a mortality rate of 60-70% and condemning the ones who do survive have a 70% chance of moderate to severe disability. This has been going on since the 1990’s with no improvement in the survival rates over the past 25 years? This is hardly encouraging.
    The field of neonatology was non-existent prior to the birth of Patrick Bouvier Kennedy in 1963. He was born at an astonishing 36 weeks of completed gestation and only lived 3 days. In the 52 years since his birth neonatology has done wonders for the survival of infants born prematurely. But to routinely advocate for the resuscitation of a 22 weeker is irresponsible. There is a point where the anatomy is just not there. These children have almost no lungs, their skin and gut is not ready for extra-uterine life. Their brains are not fully developed and lack the convolutions and form that the term infant’s brain has. Then to condemn that child to a life of disability after suffering MONTHS of torture (also known as intubation, intravenous access, thousands of heel stick blood draws, potential gut infections, blindness, brain bleeds) is pure selfishness on the parent’s part disguised as “not giving up on the baby”. Maybe in another 50 years saving 22 weekers will be as routine as a 36 weeker today, but know that those advances come on the backs of thousands of unfortunate children who were not so lucky.
    It is sad, it is unfortunate, but sometimes babies die or worse they don’t. I was a NICU nurse for 23 years and saw my share of fates worse than death. If you truly believe in God, then you also believe death is not the end of life. Sometimes it is the best answer for a terrible situation.
    Perhaps it is the failure of the medical community to provide realistic information about premature birth and survival, what it means to be in a NICU, explain all the terms and equipment so parents have this knowledge before they need it. So they are not trying to process all of these facts while at the same time faced with the loss of their child and so emotionally upset they can only think as far as the next day or week and hold on to the hope that they will come out of this with their child intact.

    • I respectfully disagree and would add two things. One is that it really isn’t up to doctors and nurses to make judge when a patient’s life isn’t worth living, as stated with the commenter’s “sometimes babies die, or worse they don’t.” While a preemie may reach a point at which care is futile and it is time to withdraw care, my argument (and the argument of the authors of the NEJM study and editorial) is that doctors are too quick to declare the situation futile. But to declare a disabled patient being in “a fate worse than death” is inappropriate. A disabled patient often does not know he or she is disabled, and may be having a good quality of life within the context of his or her disability (which we will not know). All life glorifies God.

      The other thing to remember is that the American Academy of Pediatrics’ current set of guidelines for resuscitation points out that withdrawing care later is ethically equivalent to withholding it at birth, meaning that a child can be given a chance and “let go” a few days later if health is declining. Doctors, such as ours, may prefer to say “it shouldn’t be tried” from the start because it’s less complicated that way. But allowing a chance at life (that later fails) is ethically equivalent. And, we should not say that the survivors carry the suffering of the non-survivors on their backs — that’s just absurd.

      The document, “2010 Guidelines for Neonatal Resuscitation” are available at:
      http://www2.aap.org/nrp/science_ILCOR.html
      The part about withholding is on page 8.

  4. This is fascinating information. Thank you so much for sharing.

  5. I can tell you from first hand about doctors and their opinions about micro preemies. My wife and I had a son last year. He was born at 25 weeks and 1 day. The doctor was was ok with trying to save him. My son was a fighter. He was born breathing on his own with great vitals. Every one was amazed that he was holding his own. 12 days later he had pneumonia and past away because of his feeding. Now we have a 23 and 2 day weeker. She is beautiful but the doctors were telling us we shoundnt try to save her because of her age and told use about all the problems she will have if she does survive. My wife and I wouldn’t listen to them because we wanted her to at least have a fighting chance if she chose to. And she did. She’s a fighter like her brother. The problem we have now is dealing with what we think is best for her and what some of the hospital staff think. I have to fight with some of them everyday about what is best for her. Some of the nurses chose to push their opinion on us but I keep fighting for my daughter. Since she doesn’t have a voice to speak I will do it for her. It’s a rough road but I know that she will survive. My wife and I understand that their could be problems when she gets older but for us it doesn’t matter. She is our daughter and no matter what happens she will always be our daughter. That decision is ours to make and not theirs!!!!

    • Micah, thank you for your reply and, my goodness, it sounds like you’re going through a very difficult time! I will remember you and your wife and daughter in my prayers tonight. How many days has she been in the NICU?

      It might be worthwhile to find the ethics committee or ethics officer of your hospital and tell them that the staff is not fully supporting your child’s course of care.

      Always remember that your daughter is a full family member, not a science project, not a gestational age, not a condition. The staff may act this way, but she is a member of your family.

  6. Jeff Bullard says:

    I was searching for this topic today as one week ago we faced these very issues with our daughter and her pre-mature baby boy.

    While my wife and I were on a Hawaiian vacation, my daughter and son-in-law went into pre-term labor after she had experienced normal ultrasounds and doctor visits were nothing short of perfect. She entered the hospital at 22 weeks 1 day. Within that first day and many google searches, I came upon information that gave me and all of us hope. One of the things I was hearing from my daughters was this idea that 24 weeks was their hospitals hard and fast rule or benchmark for viability, even though we were seeing different. That stats were sobering and we understood the severity of our grandson’s condition if he were to be born. We asked about preparations, steroids and other lung prep that could be done. All things that my children shared with me they would not do until 23 weeks and there were nothing but grim reports and apologies even though you could hear the healthy 160bpm heartbeat in the background of our phone calls. Their hope… “bed rest until 24 and then we will see?”

    Well, at 22 weeks 4 days, my daughter dilated and her water broke. Again, life saving measures were discussed with doctors and denied. Since my wife and I were in Hawaii, we had to witness with family via FaceTime the birth of our first grandson. Our children were warned of the elongation and bruising that he would have (of which he had NONE) and that he would be very tiny and would struggle. Well, he was tiny, but not as many would expect. 1 lb. 4 oz., 12 inches long, and a good skin tone. We watched as they held him, he moved arms and legs and would give an occasional gasp for air. We watched as nurses would check his heart rate every 20-30 minutes and as the family present held and loved on him… It was excruciating and left us wondering.

    We are a faith filled family, I have been a pastor for over 20 years and have amazing children that walked through this with the help of God by their side. I do not hate anyone, nor do I hold contempt for “policy”, I know hospitals need to have something. But, I could not help but wonder why they could not have a policy that would include offering 12 hours, 24 hours, etc… of care for those that are within that 22-24 week window until it would be determined that the baby’s challenges and issues were too great instead of just writing them off. There is the other side of me that understands that many days, weeks, even months of neonatal care would not be a guarantee and they still could suffer a devastating loss… but, I cannot help but think that a 10-20-30% chance of survival is worth it.

    Our grandson lived for 2 hours and my daughter and son-in-law and family that were present provided great support. We celebrated his life this past Saturday where hundreds of friends and family gathered at our church. Our grandson was also born on our daughter’s 23rd birthday. Truth is… we are and will make it, but it is difficult to get out of our mind’s the “what if’s” as it pertains to even the shortest amount of care and evaluation.

    Your story and even the things written in it resonated with me and my heart and I will share this site and your works with my daughter in the days to come. Thank you for them and for allowing me to share our family’s story from the past week…

Trackbacks

  1. […] This post was originally published on Preemie Babies 101. […]

  2. […] limit for gestational age for resuscitation, and I did not like how the data were presented.  I’ve said this in blog posts on Preemie Babies 101, and I said this to our hospital’s ethics committee, and the response that always comes back […]

  3. […] Wait, what? The doctor can just refuse to provide care and leave the baby to die, even though the family wants to try to save him? [Read the rest of my post on PreemieBabies101]. […]

  4. […] as well as saying this is creepy like “A Brave New World” or “The Matrix.” As the dad of a micro preemie who was born at 22 weeks and 6 days of gestation (and who’s trying to publish a book on the topic) I thought I’d weigh in with several […]

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