Is Letting a 21 Week Premature Baby Die, Considered Health Care Rationing?
Posted by realityrounds on September 15, 2009
No, it is not. Let me explain. There is an inflammatory article published in the UK Mail Online; Ms. Capewell, a 23 year old mom is claiming English doctors let her 21 5/7 week infant die only because they were following national perinatal guidelines. If only he was born at 22 weeks, she insists, they would have tried everything to save him and admitted him to the Neonatal Intensive Care Unit (NICU). Ms. Capewell, who has had five miscarriages, said the guidelines had robbed her son of a chance of life. She said: “When he was born, he put out his arms and legs and pushed himself over.” The article mentions the 2006 case in the United States were a 21 6/7 week infant, Amillia Taylor, survived after doctors mistakenly resuscitated her, thinking she was actually 22 6/7 weeks gestation. The infant is now two years old and living with her family in Florida. Ms. Capewell states, ‘Thousands of women have experienced this. The doctors say the babies won’t survive but how do they know if they are not giving them a chance?” Following her experience, Ms. Capewell has set up a web page Justice for Jayden urging a change in the British legislation:
The website states:
I had a little baby boy called Jayden on 3rd of October 2008. Sadly I had gone into labour too soon and he was born just halfway through my pregnancy. When I went into labour I was told he would be born dead, disabled and his skin would most likely be peeling off, in actual fact he was perfect. As you can see from his pic he was born alive, he was responsive and lived without help for nearly 2 hours. ReguardleJss of this doctors refused to come and see him let alone consider helping him. This is down to government legislation stating that babies born before 22 weeks are not viable and are not to be helped. Now I’m asking for your help in changing legislation so other families don’t have to suffer unnessisarily.
My heart goes out to this mom who lost her infant and suffered multiple miscarriages. I can’t imagine the pain she must have felt when she lost her child. As a NICU nurse I must disagree with her on her assumptions of care for an infant born with such extreme prematurity. The doctors were just in their actions. It would have been an extreme injustice to Jayden to attempt to resuscitate one so premature. There is a term in medical ethics called Benevolent Injustice. Below is an abstract of an article written by Brenda Barnum, BSN, RN, for Advances in Neonatal Care, that talks about this concept:
There is a little-recognized cohort of NICU patients whose outcomes are the result of a benevolent injustice in their healthcare course. Many of these infants are saved by technology; however, they are left both medically fragile and medically dependent, and many of them are required to live in a medical facility. Many of these babies never get to go home with their parents. This emerging cohort of patients may evolve from the difficult ability to prognosticate outcomes for neonates, overtreatment, and acquiescing to parental demands for continued aggressive care. Neonatology is an unpredictable process and one that is never intended to harm, but carries with it the potential of devastating consequences, thus creating a benevolent injustice.
From reading the UK Mail Online article, and more importantly reading the over 600 comments on this topic, it has made me painfully aware of the ignorance, naivete, and anger the public perception is of caring for infant’s at the edge of viability. Nowhere in the world, including the United States( which arguably had the most advanced technologies when it comes to NICU care), is it routine to resuscitate infants below 23 weeks gestation. In the United States, guidelines for initiating resuscitation vary from 23-24 weeks, and 450 to 500 grams. These guidelines vary by state. Contrary to what Ms. Capewells web page states, it is not “government legislation” that dictates whether an infant born before 22 (really 23 weeks) will be resuscitated and admitted to the NICU. It is the physicians and staff at the delivery. If we are called to a delivery for unsure dates between 22-23 weeks, (the NICU team does not attend deliveries between 21-22 weeks) we first counsel the mom on what will happen and give her as much information as possible, regarding outcomes and survivability. Her choices are to do nothing and provide only comfort care, to start resuscitation until the baby “declares” himself, either by improving or decompensating, or request a full blown resuscitation. The physician’s at the delivery will assess the infant and it is ethically and legally appropriate to withhold or stop a resuscitation on such an extremely premature infant based on how the infant presents himself.
Infants born at 22-23 weeks gestation have a 1-10% chance of survival, with the high end requiring the most advanced NICU care possible. Of those survivors, greater than 95% will suffer profound neurodevelopmental impairment NICHD/NIH. By profound neurodevelopmental impairment, I do not mean the child will have a learning disability, or need to walk with canes, or have mild cerebral palsy. I mean the child may suffer from intractable seizures, need a feeding tube because of being unable to swallow, have varying degrees of blindness and deafness, have spastic quadraplegia and be wheelchair bound, never speak, never crawl, never walk, never run, etc.
I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The extreme measures involved to keep a 22-23 week infant alive is staggering, and it is ugly. I once had a patient who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen their skin fall off. I have seen them become overwhelmingly septic as we pump them with high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.
Ms. Capewell claims her 21 6/7 week preemie was able to “push himself over,” and was “born perfect.” An infant born this prematurely does not have the musculature to expand their chest wall in order to breathe, let alone “push” themselves over. Jayden may have been “born perfect” for a fetus, not for a viable neonate. His eyes were still fused and his skin was gelatonous. He was born too early. We do not have the technologies to save an infant as young as Jayden. Trying to save him would be an experiment in futility. An experiment on an actual human life.
What really struck me most in the UK Mail Online story, was the comments left by readers. Many of them were Americans. They tried to twist this story as a fight against health care reform and that not saving a 21 weeker was rationing care. I will not go into politics here. I will say that comparing not saving a 21 week fetus to rationing health care is a ludicrous argument. It has nothing to do with trying to save money. It has everything to do with humanity, and morality, and justice.
RR
*Hat tip to one of my readers for alerting me to this story. She used to have a blog, but I can’t find it. Maybe she will comment….hint.
Kellie said
Amen! As a NICU nurse and NNP student this post is right on. In addition to my experiences in the NICU as a caregiver, I’m also the mother to a 30 weeker and 25 weeker who are now 6 and 4. Life in the NICU can be incredibly ugly and death is certainly not always the worst possible outcome. We have patients who have spent over 2 years in the hospital ventilated never going home due to their unstable condition. This is no way to live and unfortunately the mass public cannot fathom the extent of care provided. The “miracle” preemie stories of the press do such a great injustice to the reality of neonatology and viability. I cannot wait for the day that a correct picture of extreme prematurity is accepted by our society. Thank you for writing such an insightful response to this story.
realityrounds said
Kellie,
Thanks so much for your comment. Your perspective as a NICU nurse and a mom of preemies is very valuable. I do wish the public was more aware.
Takingheart said
As always… a great read.
There are some things worse than death.
pinky said
I remember taking care of patients whose skin was so fragile that you could not use tape. Their skin would peel off in chunks. These were adults. We were keeping them alive. For what and for how long? Your post reminded me of one such patient. Sometimes it is more humane to just let go.
realityrounds said
Agreed. When did a peaceful pain-free death become a bad thing?
NursingBirth said
Thank you for writing about this story. As an L&D nurse I often wonder what happens to many of the very (“micro”) premature babies that deliver on our floor, and I am talking about the ones over 24 weeks/500 grams! Only very rarely do these moms and dads come back to visit us (maybe they visit the NICU but they rarely visit us down in L&D!) We often have patients who PPROM at less than 23 weeks and bring up this story of the baby that was born at “22″ weeks/”21″ weeks (I doubt many of them actually have read about the real story, rather, have only heard about it from others like a game of telephone) and I know that they just want some hope to hold onto but it is so hard to counsel them when all they talk about is “what if there is a miracle.” I agree completely in regards to Benevolent Injustice. One has to think of quality of life!!! But it is hard to explain these very difficult concepts to parents in general, never mind those without an ethics/medical background. A very VERY well written post RR, thank you!
~Melissa
http://www.nursingbirth.com
realityrounds said
Thanks Melissa,
It is heart wrenching to counsel mom’s with an imminent delivery of a pre-viable infant. Many parents only see a “perfectly” formed mini-baby. As we know in the NICU, this is not the case.
Sarah said
Well said. I currently work in the antepartum unit of a large medical center. We see so many PPROM’s, PTL’s, multiples barely hovering around viability. I feel for my patients, they are in a difficult place. It’s a shame and cruel that websites like those you wrote about give these families such false hope.
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anthea said
Unfortunately, this is what the Daily Mail is good at. Simplifying and polarising complex issues that most of the readership don’t understand.
The mother is obviously heartbroken. I believe its clear when she says her baby was “perfect”. All mothers say this about their newborns, but the photo speaks a thousand words. I don’t believe her plight will change anything within the NHS as there is too much EVIDENCE that goes against what she wants. And the Daily Mail won’t ever get to the real detail the public requires to make informed, intelligent responses to.
Ah well, what can you do but start a well-informed blog about the complexities and reality of it all!!
Anthea
Whitney said
Thank you for your post. In the last few weeks, as I passed the cutoff for viability in my pregnancy (I’m now 29 weeks), I thought long and hard about what I would do should I deliver prematurely. I only hope that I would have the strength to say goodbye instead of clinging to hope that my baby would be the 1 in a million with a good outcome.
It is an injustice to aid the survival of children who will never enjoy their lives, much less contribute to society, and an insult to the people they would have become had they achieved full gestation.
My mother-in-law recently died following a week-long stint in the ICU after battling acute lymphoblastic leukemia for a month. That short experience taught me that death can be a kindness and that holding on is often more about the family members who survive than the patient themself.
Yehudit said
Still have that blog, but haven’t posted anything for ages. Thanks for this article. You explain things so clearly.
midwest woman said
As a geriatric nurse, I see the other end of the spectrum. Corpses on ventilators. Endless discussions with families that go nowhere. Do everything. This is a serious and costly problem in healthcare. How did we get to this point where, to respect patient or family wishes, that we cause suffering? When did death or bad outcomes become an alien concept? Or viewed as a doctor’s indifference?
Bad things happen that we can’t control seems to be a foreign concept now. And the most vulnerable, the patient, is becoming the victim of the illusion that medical science and technology can trump all.
Troubling post.
Pampered Mom said
I’ve often wondered this myself.
Helen said
At last- the voice of reason!
Rachel said
You didn’t read the article very carefully. I completely agree with not providing life support for the baby once born. But the UK hospital didn’t even try to stop the labor. That’s clear negligence. Plenty of women have gone into labor at 21 weeks, and then carried the pregnancy for weeks or months longer. It’s possible that stopping the labor was impossible – but they didn’t even try. Probably they didn’t want to have a bed tied up for months until the baby was born healthy.
realityrounds said
Rachel,
Unfortunately I read the article very clearly. I would not expect the UK Mail Online to give a clear picture of what was happening to the mom prenatally. I hope some L&D or midwives will chime in here, but this is what I think. If this mom had a history of 5 previous miscarriages (no idea at what gestation) she would be at high risk for preterm labor. If she came in with advanced dilation and progression of labor, nothing could be done to stop it. “Trying” to stop it with the powerful drugs they give moms to stop labor would be dangerous for her, and pointless. She was being cared for by a UK midwife, and I have read some of the midwife message boards concerning this case. They are mortified that they are being portrayed as “negligent” and “murders” and that all they cared about was money or a bed space. They practiced standard of care, rightly, and they are being vilified for it.
Jessica said
I went into labor at 21 weeks and was put on medication and hospitalized for 2 weeks, until I could be on oral meds and go home. I delivered a very healthy little boy at 38 weeks. I would have to agree on most of what has been written by everyone, except we don’t know how far her labor had progressed. From what I read, it didn’t say anything about that. And even if percentage’s show the probability of the child ending up on a vent, feeding tube and different things, doesn’t the child still deserve a chance? How many people do we have in this country that don’t necesarily have the legal papers to be here, but use our medical assistance programs and our state aid programs? Aren’t those the ones we should be concerned about monitering there use of our health care system. If that was any of you that are nurses, with your child dying in your arms….trust me..you would insist that they do everything to save your child!
Molly said
“How many people do we have in this country that don’t necesarily have the legal papers to be here, but use our medical assistance programs and our state aid programs? Aren’t those the ones we should be concerned about monitering there use of our health care system.”
Careful. Those are people you are talking about- living people who have just as much a right to health care as any other individual on this planet. I suggest that the next time an undocumented individual comes to an ER with a life threatening ailment that you be the one to turn them away.
MomTFH said
Stopping labor is impossible. What they did not give her is steroids to mature the baby’s lungs, because it would have been pointless. Steroids (mentioned in the article we all read carefully) do not stop labor. Tocolytics do stall labor – for about 24 hours, in which one would give steroids to mature the lungs. If there was any hope for viability, which there wasn’t.
atyourcervix said
Once you are in full blown labor – it cannot be stopped. Even with the post powerful tocolytic agents. Steroids are not given before 24 weeks. Their use and effectiveness has not been proven before 24 weeks gestation.
If we get a preterm patient who is in the earlier stages of preterm delivery (say, before 4 cms dilation), we can *sometimes* slow down the progression of labor. Not always. It’s a very difficult and delicate line that we tread when trying to stop preterm labor.
Ciarin said
We would not attempt to stop labor in a women less than 23-24 weeks. You can not be safely (for mom and baby!) on magnesium sulfate long term (more than a few days). Steroids aren’t given prior to 24 weeks due to no research showing benefit.
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MomTFH said
Thanks for this post.
sarah h said
Very well written post. Thank you for sharing your thoughts and experiences.
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Akiko said
See what has become of journalism today? The will print anything to get a rise out of folks. It is ludicrous to say this child pushed himself over. This mother is filled with grief and ws willing to do anything to save her child, that is understandable. But she is no medical expert. Too many people believe in miracles of the supernatural but not in realism and science.
Rebecca said
I just saw this and the follow-up post. I’m sorry that you’re getting negative feedback for what I think is a very reasoned and reasonable view. I can’t imagine what it would be like to finally believe after so many miscarriages that you would be having a baby, and then have your heart broken again. But I agree with one of the other commenters…if I had a baby born just around that viability line, I would hope and try so hard to let them go peacefully.
I will say, though, that I think this lack of understanding is very, very common. I worked on a survey this summer of mothers who had experienced infant and fetal losses. Many women who delivered preterm babies just didn’t understand why more extreme measures weren’t taken. There is a perception out there of the “miracle baby”, and the belief that technology and doctors can beat prematurity. So the women’s grief was compounded by the perception that their babies could have been saved, but weren’t valued by the system. I would sometimes start to tear up as I read the comments of the women who were so sad and so angry and felt so powerless.
I think we need better grief counseling and support for mothers after a preterm loss, to help them understand what (if anything) could have caused their preterm labor, and why their babies couldn’t survive, even if they were born breathing for a short time. This mother is just the most vocal expression of that problem. It is very, very real.
Joy said
Is this the post you got so many heated comments on? If so, all I can say is that it would be MORE inhumane to put these sweet babies through all the things they’re put through, only to have them die anyway.
I understand the momma just wanted someone to TRY but instead she should’ve spent the time holding her baby and saying goodbye than getting angry at the doctors. I’m pro-life but I’m also realistic.
dianne said
I feel that as soon as the babies heart is beating God created it to be born. what ever time it is born God gave doctors knowledge to take care of the week letting it suffer and just die, is cruel. I am with the mother safe my child. It is god life.
Ciarin said
Uh, speechless…thought I could respond but totally speechless.
TheFeministBreeder said
This is a tough one. I think you are right. There is a certain point where technology is cruel, and there is no justice in this situation from any angle. That poor mother is grieving, but it doesn’t sound like anything humane could have been done to help that poor baby.
It is really, really hard to hear about any doctor just refusing to help though. Couldn’t there perhaps been some more empathetic way to handle this? Couldn’t a doc/midwife/anybody come and sat with the baby and the mother for that two hours? It sounds to me that this mother may be suffering from some pretty serious emotional trauma from the situation, and it sounds like most of it was a result of not feeling listened to. I think we can all agree that providers these days hardly listen to patients at all. How about some sensitivity training? Maybe, just maybe, this mom might not be so grief-stricken if she’d felt like they helped her through it, rather than ignored her?
I just have a feeling that there has to be a better way to handle situations like this. Grief is a part of life, but I’d like to think a little human compassion could help mitigate it.
janette said
as a nurse and a mother of a preemie (after 4 miscarriages), i can see both sides of this story. however, i totally agree that some sensitivity to the situation would have made all the difference. people who are not “medical” need things told to them in the very simpilest of ways so they can understand the “medspeak”. add to that the trauma of losing something that you have tried so very hard for. sensitivity training is not taught in nursing school. i doubt it is taught in med school for the doctors either… it very well should be. a little sensitivity and tact goes a very long way in a hard and heartbreaking situation.
realityrounds said
Janette,
You are absolutely right! I have unfortunately seen doctors and nurses speak very bluntly and clinically to mom’s who are about to deliver very premature infant’s. Compassion and sensitivity training should be taught in medicine and nursing school. You bring up very excellent points.
Anna A. said
I am the mother of a former 26 weeker.. 513 grams ( he was the size of a 23 weeker due to severe IUGR) They knew I had problems early on and did not think I would even make it to 20 weeks. The day they put me in the hospital I had no anmiotic fluid or as the dr. said it was ” dry and dusty in there”.. there were quesiton if they could even deliever him because they were not sure he even weighed a pound ( they measured and remeasured) they performed an amniotic infusion and PUBS ( blood from the placenta) because early on I had refused and amnio.. they would not deliever until they were sure he did not have cromisonial abnormalities.. they were not sure he was ” viable”.. I tried to refuse the test but my only other option was as the dr. put it to send me home with a stethescope until I did not hear a heart beat anymore.. I had to wait 24 hours for the tests ( while my son was kicking the monitors off.. happy to have fluid to swim in!) I couldn’t imagine him not being ” viable” as active as he was. As soon as the tests came back they rushed me in for an emergancy c-section.. my son spent 3 and a half months in the NICU with such wonderful nurses and doctors to care for him. I spent everyday by his side.. he is now a very healthy, happy, AMAZINGLY wonderful 13 year old, who has been a true blessing.
I saw many sad stories in the NICU.. many babies who did not get to go home..but I know our story could have had a diferent ending if I was not at one of the top hospitals in the country. I had a doctor who was willing to take a chance.. and I thank him everyday. He beat the odds.. they said he could be blind, have CP, brain bleeds, we heard it all.. none of which happened. Yes, I know that is not always the case, but I am grateful that my son was given the chance to LIVE.
realityrounds said
Anna,
What an amazing story! I am so happy your son is doing well and thriving. You story is an inspiration to other families.
mom B said
WOW!! This takes me back. Our sons would have been 24 now. They were born at 26 weeks in 1985. One-Robert- lived for one month and died of an infection in the NICU. Our other son Edward lived for two years!! He came home from the hospital at 18 months on a vent to a mini ICU, was rehospitalized three times and died after an upper respiratoy episode at home.
I am a Pediartic Nurse Practitioner and was very familiar with NICU and L&D. From the other side of the bed there were very few decisions that we had control over. There were many ups and downs and frustrations. Many discussions with MD’s and nurses. Several surgeries(complications of prematurity). Extreme developmental delays. I was never sorry that the physicians opted for life, especially since in our case all indications were that our children were and would be normal, but the experience changed life for our family in profound ways. I learned so much as a young mother about the will to live, the tenacity and resilience of infants, the taking one day and sometimes one hour at a time, communicating with staff and discussing all with my husband-our marriage is stronger for this bond. I believe my other children are more compassionate from this time in their young lives and they certainly learned a bit of independence since I spent some time at the NICU daily.
Over the many years since I have wondered just how much neonatal care has advanced since I no longer work in that field.
Apparently we are not yet able to clone out of the womb!! Thanks to God that it is still ultimately His choice over viability or death. It is too bad that some want to politicize an extremely personal and painful time. It is unprofessional and unforgiveable that doctors and nurses do not provide compassionate end of life care to both the infant and the parents.
Jaycie said
I delivered a 600 gram, 24 weeker back in 1983. At the time, I would have loved for there to have been protocol in place that would have meant my son had every medical intervention performed to give him a chance to survive. However, the things I have learned since then have convinced me that agressive intervention was not in his best interest. Waiting those few hours for him to stop breathing were torturous, but better than the sheer torture (yes, that’s what I believe some of the medical procedures are for a micro-preemie) he would have endured. Neonatal care has come a long way since then, but there are still times when comfort care and a peaceful death are in the best interest of the patient. This was not what I thought right after delivery, but something I came to realize after learning what is involved in trying to save such early babies. Jayden’s mother may come to this realization one day as well.
realityrounds said
Jaycie,
Thank you for your very powerful comment. This is a very sensitive topic, and you addressed it well.
DGAD said
I’m currently 22 weeks 4 days pregnant. I’ve been in pre-term labor since 16 weeks on bedrest… Those of you who are so ignorant to say that tocolytics only prevent true labor for 24 hours… do not know what the hell you are talking about. This is my 3rd instance of preterm labor. 1st was 1994 – began at 27 weeks and delivered at 35 weeks with use of Brethine/Terb Pump – 2nd was born in 1995 – began labor at 19 weeks and delivered at 34 weeks with the use of Brethine/Terb Pump… This time I’m 37 and it’s been a lot more difficult and fast moving… however, as I said, I began labor at 16 weeks started on p17 shots and Procardia. At 20 weeks I really started to have change in my cervix, begged for Terb… admitted to the hospital and I’m still here (now at home), with baby inside me at 22 weeks 4 days. Tocolytics DO stave off labor in conjunction with bedrest… and I’m proof of it. I do not know when I will deliver this little one… but if I can make it past 24 weeks… It’s for the most amazing cause imaginable and any doctor who will not consider it (as my insurance company did not want to cover it either)… are completely stupid. It’s LIFE! It’s WORTH TRYING TO SAVE! Only because of my previous history with advantageous benefits, did my insurance company finally conceed and allow me to be administered tocolytics. I’ve now been on tocolytics for 2 weeks – Procardia and p17 did nothing for me. I was given Terb and my contractions HALTED… Do I have flare ups? Sure.. I’m given an extra bolus of meds and it stops.
I was told by two on call docs in the hospital that they usually do not do anything to stop it… and I would most likely lose the baby and they did not believe in Tocolytic therapy… I said.. “My doctor will administer it… and you just watch me!!”…
I have no infection, no incompetant cervix and no other reason for Preterm labor… that they can determine.. It just happens to me and without Tocolytic therapy… I would not have 2 healthy children, with this 3rd one on the way…
Kathy said
Isn’t terbutaline what Bobbie McCaughey was on, to stave off her labor as long as possible with the septuplets? She was on that for a while…
DGAD said
I am not sure, but probably so… because it works! It may not work forever, but it does work!! And if my doctors hadn’t given it to me, I doubt I’d still be pregnant…
Denise said
Its hard to see the wood for the trees when your in that situation. My daughter had a massive bleed 16wks into her pregnancy and was diagnosed with a low lying placenta, she was sent home, bleeding continued a further 2wks, then another massive bleed, again sent home and continued to bleed with pain and also lossing a bloody fluid at times which she informed the OB. She was scanned at 20wks and told she had been wrongly diagnosed at 16wks and that the radioligist had ticked the wrong box the form and she never had a low lying placenta, scan also showed hardly any fluid around baby, and signs showed he had either swollowed blood or he had a chromosome abnormality. We asked if she could be having a placenta abruption and was told no it was rare to happen before 28wks and no tests were given. She was given an amnio test at 21wks as advised, we asked if she was higher risk of miscarriage because of the bleeding and was told no, fluid was full of blood and also clot found behind placenta on scan, again sent home still bleeding and in pain, another massive bleed at 23wks, scan showed no fluid around baby, antibiotics and steriods were mentioned but none given throughout the week, another massive bleed 23wks and 4days into the pregnancy, told to go back to bed by OB at 4am, soon after pains got stronger and bleeding heavier, told by midwife to go back to bed, no obs taken and no pain relief given, lost alot of blood and clots over toilet floor but not even checked by midwife, my daughter put bath towels on the bed because there was so much blood. By 7.30am by daughter phoned me at home in alot of pain and scared out of her mind, she said she thought she was going to die, it was only then after the day staff had come on duty my daughter was rushed off to side ward docters coming from everywhere, scan showed my daughter was having a placenta abruption, baby stiil had a heartbeat at 9am, he was born at 11.11am but had sadly died, we are not sure at what stage his heart had stooped beating but he was offered no help, the cord was cut and he was placed in my daughter’s arms. The grief of losing a baby is hard to bare but under those circumstances it is unbearable and due to their negligence i could have lost my daughter as well. Its the not knowing that makes it difficult when our babies are not even given the chance.
realityrounds said
Denise,
I am so sorry for you and your daughter. That is a heartbreaking story. OB can be the happiest and the saddest place to be. I wish you and your family well.
Tammy RN said
I am so glad to have found this thread…I googled specifically looking for someone responding to this article. I have been a NICU nurse for 16+ years, but currently do Bereavement Care for the entire continuum of perinatal loss in my city, so previable birth issues do come up.
I suffer every day from having to teach people the actual truth about viability. 22 weekers dont survive and the treatment of choice is the wrap them in a warm blanket and hand them to their mom.
I am a devoutly Catholic prolife person and I am absolutely mortified that the Catholic Prolife community are using this case to spread disinformation. One if NOT doing ANYTHING morally wrong to not resus a 21-22 weeker. The US Conference of Catholic Bishops state that one is not morally obligated to submit onesself to burdensome treatment with no reasonable expectation of recovery…and a trip through the NICU for a 22 weeker is hellishly burdensome with NO chanceo f recovery. We need to educate society so that people dont think were being “mean” to not attempt to prolong the deaths of these dear little ones.
I received an email from a prolife group today and their discussion of this topic was inaccurate, & inflammatory and I will never again be able to support them. What scares me worse is what will they accuse me of ? killing?
realityrounds said
Tammy,
Thank you so much for this comment. I certainly have been vilified on the internet for daring to speak to the realities of caring for infants on the edge of viability. This includes being called a killer, that I should lose my nursing license, that I am selfish, delusional, etc. UGH. For someone who has dedicated their life to caring for and saving the life of babies, this is hard to hear. I am about to quit blogging because of it. My skin is too thin.
No one seems to notice that the majority of pro life commenters agree that extreme measures should not be taken for babies who are periviable. What happened to compassion?
Again, thanks for your comment. You have no idea how much it means to me.
Stacy said
Thank you, RR, for speaking out about the impact that prematurity can have on a child! As a mother of a 25.5 weeker, I am committed to discussing the long term impacts of prematurity.
I too have come under some very nasty fire as a direct result of my honesty on my blog. Hang in there.
Thank you again!!!
Preemie Dad said
Don’t let the crazy zealots get you down. That the suffering of babies is turned into fodder for political one-upsmanship disgusts me. I’m a father to a 30 weeker, and I think that they’d all think differently if they’ve seen what you and preemie parents have.
I still hold my son’s NICU nurses in a very special place in our hearts – to be so kind while having to deal with that sort of pain every day – it helped keep us sane.
Andrea said
While my heart breaks for this mother who has lost so many, I could not agree with you more. I watched my son fight for his life as a 33 weeker and know what a rollercoaster it is. At the extreme prematurity of a 21-22 weeks or even less, what kind of a life are they going to really be able to have? One with no real quality, but one filled with pain, machines and hospitals. Allowing the too-soon fetus pass with dignity and love felt from their parents is all that I would hope for them.
Tammy RN said
I wish that people understood that the case of the single 21+ weeker was miraculous…miracle…as in God choosing to suspend the natural laws to change something. God is God and can do what he wants, but we cant make broad policy based on isolated miracles. When we see 22-23 weekers admitted to the NICU, they have thier honeyoon time then die awful deaths. We havent had a single 23 weeker that Im aware of survive…some 24 weekers do ok. 21-22 weeks… automatic comfort care.
O'Cuinn said
I am a NICU RN. I think every pregnancy should be considered uniquely – along with every premature/term infant. However, it is still important to look at typical fetal development. You cannot ventilate a “typical” 21 weeker as the blood vessels have not yet reached the alveoli! It is impossible. No matter what you do, if the lungs have not yet developed, the infant will die. Furthermore, the less the gestational age the higher likelihood of other moralities.
Everyone is so afraid of dying in our society. What about living in agony? Intubated, unable to express pain & therefore nurses unable to determine if you are in pain, multiple IV starts, infections, surgeries…etc…
Injustice doesn’t even describe what some of these babies have to go through.
Tammy RN said
Dear RR and other readers on this topic,
Because of the healthcare debate and the lack of understanding of the actual limitations of neonatology, this story continues to be perpetuated in Prolife media circles. I spent days writing, emailing, & calling organizations to inform them of the misunderstood realities of this case (and those like it – for the very reasons RR posted) and after a week of beating my head against a wall, I was the MC of a gala and the keynote speaker got up to give her speech and about 10 minutes in, guess what she said – OH yes, the case of the British 21 weeker brutally left to die. I put my head in my hands and nearly wept.
After her speech, I approached her (we were at the same table) and explained carefully why that story is inaccurate and why advocating aggressive care for 21 weekers is without basis.
These well meaning but misguided folks need to go to Medical and Nursing school and they can take our places and when they have YEARS of experience of watching these little treasures die in horrible pain, they can come back ad tell us who was right.
Im with the dad above who said that turning the suffering of babies onto political fodder is disgusting.
Chelle said
I as a midwife in the UK have to agree with you. I have attended and deivered babies of gestations ranging from 16 weeks to term. The reality is that the very small babies are not going to survive without the most intensive care that is putting them and their parents through such severe pain. There is no law as such in the uk that determines at which gestation we should or should not resuscitate babies, its up to discussions with the paediatricians and parents. I just wish the general public would see the entire picture……….
jen said
i just want to say i’m a mother of a 24 week baby girl. And i remember for myself before i had Ava i was asked if i wanted her revived and of course i said yes do everything you can to save her.. And that was because almost exactly to the day i had a son at 20 weeks 6days and was stilborn and my daughter made my 6th pregnancy. so i understand the loss part so yes i wanted them to do anything tohelp her if they could. Now that being said my daughter came out alive which was a relief for me until the nightmare began.. my daughter weighed 1pound 4oz but after all the surgerys she went through and she had grade 3 and 4 brain bleeds i second guessed what i said at the begining and told them if she gave up to let her go that would be her way of telling me she was done fighting which she never did. surprisingly she is a very happy 1 year old as of friday and is perfect don’t have any problems is actually advanced in many ways and is not behind on anything off her due date. but we are reminded of all the scars everytime we change her and there is a lot she had 4 surgerys and many times thought she was not going to make it. but after seeing her and what she went through i no my son Aidon that i had 2 years before it was better he went the way he did rather then me watching him suffer cause what a lot of people don’t realize is they have 1 size tube and if they can’t get that vent tube down there is nothing they can do for the baby.. i no after Aidon died i hated the world some of the docs everything until i saw what my daughter went through and then i realized… and yes my daughter pulled through doesn’t mean the next will or have a bunch of life term problems. i no when we were leaving the hopsital with our daughter her head nurse came to see us and told us about a little girl he just had just like Ava same weight 24 weeker had the intestine problem and they were going to do surgery and he thought for sure she would pull through considering Ava went through hell and she didn’t make it and he was shocked and couldn’t believe it… I miss my son to i feel for this mother but she will have to realize as i did i had to stop thinking about me wanting him and what about what he would of went through to fight if there was anything they could do to save him.. in these situations as a mother your first reaction is to blame the doctor or nurse in they could of done this or that… sorry for rambling i just came across this and wanted to share my story
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Fantastic Kangaroo Care and Skin-to-Skin Contact Resources « Woman to Woman Childbirth Education said
[...] stressful for the parents, stressful for the baby, stressful for the workers. Finally, “Is letting a 21-week baby die health care rationing?” which includes the following paragraph on “Benevolent Injustice”: I have cared [...]
Suzanne said
Thank you for sharing. I was admittedly shocked and saddened when I first heard this story. However your story and the comments of others have taught me a lot. It makes me wonder if the doctors didn’t give her the right briefing and info that you say you give your patients. The girl in the story makes it sound like the doctors said “eh, he won’t survive, see ya”. So if that is the case, she has a right to be upset.
However if they would have told her all the possible scenarios, then she should have been prepared and this wouldn’t even be a news story.
I have one question based on a comment I read. How many weeks you are can often be just a guess, not everyone always knows exactly when they conceived. How do they know if it was 22 weeks and 1 day or 23 weeks? Those few days make such a big difference in a decision to save a life, so is that a question you ever have to deal with in your job?
Thanks