Pregnant Woman Fights Court Ordered Bed Rest

***Helen added a link in the comments which I am posting here. It is a later article written about the case and goes into much more detail.***


http://abcnews.go.com/Health/florida-court-orders-pregnant-woman-bed-rest-medical/story?id=9561460&page=1

I first saw this story on a support group but have since seen it popping up all over the internet. I found it to be quite appropriate for discussion here since there have been many times when comments have been posted about how we should treat women/pregnancies where prematurity (or the threat of prematurity) is involved...

Personally I do NOT agree with what was done to this woman and reading the article brought back horrible memories of when I was admitted to the hospital 11 years ago. My husband and I were sat down and told that once I entered into the hospital at 23.2 weeks (it was the 2nd hospital that I was taken to. The first hospital didn't have a level 3 NICU) that the health of our baby took precedence over everything else and I would not be allowed to leave until I delivered our child. I wasn't even allowed to leave my room unless accompanied by a nurse. I had to beg the doctor to allow my husband to push me outside to get some fresh air and that was only allowed once (after 2 weeks of being in one room). Even though I felt trapped (overwhelmed, scared, angry, sad, depressed, etc) I was willing to stay. But I can't even imagine what it would be like had I really wanted to leave and was legally stopped from doing so.

It Came! It Came!!

I received the most exciting thing in the mail today and it's not even my birthday.

Stay tuned...

Should the Cost of Saving a Preemie...

Should the cost of saving a preemie dictate the minimum gestation that a preemie can be resuscitated?

This is such an emotionally charged topic but one that I find very interesting when you take your own personal situation out of your emotions and try to look at it from every angle.

An article in Politics Daily, written by Joann M. Weiner, brings up this subject (in relation to health care reform).

In her article she writes (of an article in the New York Times)...

Writing in The New York Times, Jane Brody told a very compassionate story of an 11-year-old girl who was born after just 25 weeks gestation, weighing only 13.5 ounces, but who is now, amazingly, an accomplished writer and illustrator. Brody did not cite the costs of the child's neonatal intensive care, other than to say that the infant spent the first five months of her life in a Falls Church, Va., hospital. (It is difficult to find data on such costs; one hospital in Rhode Island estimated the daily expense at around $2,000, which means that a five-month stay would cost upwards of $300,000.) The Times article concludes with a comment by Dr. Michele Walsh, a neonatologist in Cleveland, who says that although it is expensive to maintain "million-dollar babies," it becomes very cost-effective over time: "There is a return on investment when they get out into the work force and pay taxes."

That last sentence... that's where I'm stuck. Really stuck.

First off... the cost of raising a preemie can be far more costly than the NICU bill. I know of families who have hit their life time insurance cap before their child was 5. That would have been us had my husband not changed jobs (a job change made necessary because of our insurance issues). Preemies, post NICU, have years worth of specialist visits, therapies, tests, labs, equipment, hospital stays, shots (shall we discuss how expensive RSV injections are), mental health specialists (which is not well covered by insurance and largely paid for by parents) and medications.

Paige is now 11 (born at 25.5 weeks weighing 1 lb 12 oz). I cannot even begin to estimate that cost for our situation but I can tell you that it has exceeded the cost of her NICU bill. For many years she never went a week without seeing a specialist or therapist. After age 5 the weeks turned into months but she still never went more than a few months without having something jabbed into her to run some test. This went on for many years. So, when looking at the cost of prematurity on society, let's not stop adding it all up when they leave the NICU.

(On a side note... On New Years Eve I was sitting at my computer trying to think of something witty to write as my status update on Facebook when it hit me... Paige had not seen any medical specialists in 2009. None. I couldn't believe it. I got up from my computer and combed through the calendar... She saw her pediatrician once (regular kid stuff), had her teeth cleaned twice (regular kid stuff) and had both flu vaccinations (regular kid stuff). That's it. Oh boy did I ever cry. My poor child had endured 11 years worth of appointments (labs, visits, tests, etc) and finally had a break. Although she still has regular appointments with various mental health specialists... there were no medical doctors in her life for an entire year. I know it won't last (as puberty can bring back some of the issues that have subsided) but it was worth celebrating.)

Secondly, what about all of the preemies who will never work? Since the above quoted neonatologist can justify the dollars spent as an investment... where is the return on the investment then?

And to answer my own question... the cost of saving a preemie has never been a deciding factor to me when discussing resuscitation limits based on gestation. But I've been left with a few questions rattling around in my brain now that deserve further consideration.

(I'm going to open up the comments to allow anonymous comments)

Looooong Overdue Update

I'm not even sure where to begin or if I'll include a full update. Let's just start and see where it takes us...

I think I'll start by talking about homeschooling. It has turned out to be the best thing we've ever done for Paige. If I would have tried to write about it the first year we started, this post would have a completely different feel. It took some time to figure out what homeschooling style was right for the both of us. But, here we are in year 2 of homeschooling and Paige is a completely different child.

To back up a bit... Paige was in public school from age 3 (special ed preschool) through 3rd grade. Intellectually she has never had a problem keeping up. As a matter of fact all of the testing showed that she was consistently scoring a few years ahead in math and at the end of 3rd grade she tested to be at a high school level reading. Socially, though, she was crumbling. Not only does she suffer from OCD and anxiety issues, she is a literal child who is extremely gullible. She was still tattling and never seemed to understand why kids didn't want to be around her. She is such an outspoken child and had no problems speaking up when she felt wronged-something that is not cherished in public schools. Then there is the fact that we are atheists living in the bible belt. When she found out that "under god" was not part of the original pledge (something that she found out on her own) she refused to say it and would stand her ground when questioned. Top all of that with the fact that she was the reason why her class never won perfect attendance (thanks to all of the doctors visits relating to her ongoing health issues) thus giving the kids yet another reason to tease her. She would be in tears virtually every day when I picked her up from school. She felt trapped and I didn't blame her. By the end of 3rd grade the decision to homeschool her came quite easily.

So here we are, year 2 of homeschooling and Paige is thriving medically. She has gained 15 pounds and approx. 4 inches in just over 18 months! My little Paige, who was always under the 5th percentile on the growth charts is 75 pounds at age 11!!! She is rarely sick and her OCD is under control (I'll talk more about it later).

Academically she is still quite advanced in reading and language arts. She loves science and can talk your ear off about history. But, as is the case within the preemie community, she is showing strong difficulties in math. Over the years I had heard other preemie parents talk about how their child was on target in math until they hit 4th grade and this seems to be the case with Paige as well. She is in the "5th grade" but still working on 4th grade math. This is one of the many benefits of homeschooling.

Socially she still struggles. We are starting to feel that she always will. Last year she was in a play, in our local theater, where she played a townsperson. She came alive! She is super animated which came in handy for this years production... Seussical the Musical. She was cast as one of the Whos. She had a blast but still didn't really make any friends. She often makes comments like, "I don't know why no one likes me." Thankfully she has a good friend that live across the street. Their friendship is so important to Paige.

I'm often asked if we'll send her back to school. As of now, the answer would be a strong "no". I am not anti public school. It just wasn't right for Paige. Tyler, on the other hand, can't wait to go. He just wants to ride the bus (what else do 3 year old boys like-lol). I'm not sure what we'll do when he turns 5. He is quite the technology smarty pants for his age. He loves the computer and even has his own homepage, which he can sign into himself. He knows how to get to his bookmarks and knows which games are on what site. He has started to read, can spell his name but can't write it yet. He can count and even do simple addition. He loves to sit near his sister while she is doing school and has picked up so much from their interactions. I'm fearful that he will be bored in school. If he hasn't outgrown his life threatening peanut/tree nut allergy then we probably won't send him to public school.

I am quite passionate about homeschooling so if anyone has any questions, please feel free to ask. While I realize that it isn't right for everyone, it has changed Paige's life for the better.

Medically Paige is doing wonderful. I can't even remember the last time we've seen a specialist. I know she is not out of the woods. Puberty has started and we are watching her like a hawk for signs that her seizures have returned. Since she has gained in both weight and height, we've been cleared by endocrinology. She does still have issues with constipation but now that I'm the one controlling what she eats (and not relying on cafeteria food), it's a lot better. Her headaches have all but disappeared. We have changed pediatricians and finally found someone that took her oral health seriously. Paige has holes in her teeth from acid reflux but since her PH probe was normal, her previous docs ignored the problem. Our new doc was appalled and immediately put Paige on reflux meds which is also helping her stomach aches.

As for her mental health... she is doing so much better. When I look back and re-read old posts I can still feel the pain we were experiencing because her OCD was so hard to control. She is still on 2 meds for OCD and anxiety but now that she is no longer in school the meds are able to help her keep her stress level under control. When new stress is added to her life (like acting) her mental health issues become harder to manage. But, instead of removing the stress, she is able to face it head on and cope quite well. She no longer picks her skin on a regular basis but it is something that she has to work hard on.

As for me... well that's a different story. Now that the majority of the stress (related to Paige's medical/mental health issues) has diminished, I seem to be having a harder time coping. I think the stress was keeping me going. Boy that sounds funny as I'm re-reading it. But I don't have any other way to account for these feelings. PTSD?? I find myself waiting for the other shoe to drop and can't seem to shake that feeling.

Although homeschooling was the best thing for Paige, it ended up altering life in a way that I was not prepared for. My friends had always been the other moms and we got together during school hours. That all is gone now. As I mentioned above, we are atheists living in the bible belt. I have not found a local homeschool group that will allow us to join so I tend to feel a little left out of the world. I'm not completely without friends but it has definitely changed. I still feel strongly that it was the best thing we could have done for Paige and I stand by my decision. I honestly would do it all over again. I just wish people weren't so closed minded so we could share in the homeschool experience with other local families.

So, that's about where we are... in a holding pattern... enjoying life without all of the stress we used to have but keeping both eyes open.

Visiting with Santa

Viability-Through the Eyes of a NICU Nurse

(an update about us will be coming soon... I promise)

The following post was written by a NICU nurse, who blogs anonymously at Reality Rounds.

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

**********

And, as expected, the author received nasty comments, which prompted this post.

I wrote a controversial post about resuscitating infants at the edge of viability……and now, I am paying the price for it. Being a NICU nurse is hard. You could probably tell from many of my posts that caring for infants, especially those with unknown outcomes and prognoses, can be an ethically and emotionally draining experience.

I love my job. I love saving the lives of neonates. I love the skill it takes to care for the most critical of patients. I love being a part of groundbreaking treatments that impact the lives of infants. I love nurturing the tiniest of human lives to slowly grow and blossom and thrive due to my expert care and touch.

Yet to those who do not know, who can not possibly understand, I am nothing but a baby killer.

Because I, with my many years of experience caring for the extremely premature, do not believe that extraordinary measures should be taken to resuscitate infant’s below 23 weeks gestation, I am labeled a heartless baby killer by the anonymous punditry of the internet bloggers.

It is disheartening to think that there are people out there who believe NICU nurses ,who do not advocate that every premature baby be resuscitated no matter the gestational age, are inhumane, insensitive bureaucrats who only think about the reimbursement of a bed space.

For us NICU nurses on the ground, this is a disgusting load of crap to have to hear. Below are some comments left on various blogs and threads regarding my post and how I felt about resuscitating infants at the edge of viability:

“Perhaps we should ask the opinions of some people who were once babies who were preemies and survived and see what they think about the whole business.
I have a feeling they will tell you they don’t remember a thing. And if they do, I am willing to bet they are glad they went through it.
It is all a ploy. Playing on peoples’ fears of pain and suffering to, as Scrooge said, “decrease the surplus population.
I am scared for the future.”

“It sounds to me as if some of you are looking for an excuse not to spend the time, effort and expense on children who “probably won’t make it anyway”. I don’t believe it’s about compassion at all. I think it’s about inconvenience and money.”

“This is just disgusting….he was moving, breathing, and those little bastard doctors did nothing? They should all go to prison for murder and assault on the mom!”

“Some, no, MOST families want to try, and YES we know preemies need a lot of care, at first. So, you and the NICU nurse say set them aside and let them die. Cruel and unethical?Sorry but your extravagant links show the exception and NOT the rule. YOU are cruel and unethical to deny care to these little ones.”

“Sorry it means more work for the doctors and nurses but this is Life at its most innocent and helpless and deserves a chance. We defib flat liners over and over, we try and save life, not set it aside to wither away and die.”
I have dedicated my life’s work to the care of infants. I have invested blood, sweat and tears in the care of infants, including those at the limits of viability. I , like all NICU nurses, have real, hands-on experience of caring for these micro-preemies. We know what caring for these babies entails, and what the outcomes will most likely be. We deserve a voice.

Because the majority of NICU nurses do not agree with the concept of resuscitating any infant born alive, no matter what the gestational age, this does not make us heartless baby killers. It makes us realists. It makes us compassionate. It makes us heroes.

RR

********

Thanks to Kevin MD for posting it on his blog.

Where did that come from?

I've shed many tears since Paige was born. Through the NICU period, her first few birthdays, milestones, through the feeding issues, after doctor appointments, through procedures, watching her in various stage performances (ballet, piano, gymnastics, plays, etc) and on and on.

Her early birthdays were hard. It wouldn't take much and I would be a ball of tears. Equally as difficult were the years of procedures and doc visits. As soon as she would be safely tucked in bed I would fall apart, thinking how unfair it was that she had been through so much, especially when there was no end in sight.

As the years go by the tears of sadness or tears surrounding the remembrance of struggles come less and less, to the point that they are virtually non existent now. Every once in a while those tears come out of nowhere and catch my off guard.

That is exactly what happened on Friday. I took Paige (and my MIL's hubby) to a health and fitness expo. Paige loves any and all things medical so I thought it would be a great experience for her and a wonderful homeschool opportunity as well. What I was not prepared for was the fierce emotions that would literally take my breath away and leave me scrambling to hide my tears from Paige. What caused this reaction? I managed to snap one picture before I had to stop and try to regain some composure.


Right before I took this picture I turned to my MIL's hubby and said, "Wow, doesn't that bring back memories?" as we were looking at the monitor (on the left in the pic). I swear I was transported back into the NICU. I felt sick. I felt the tears coming so I opened my eyes real wide, hoping to dry them out quickly. I kept telling myself to breathe but it wasn't working. The background noise started to sound muffled and my lips were tingling. Then it hit me; I was in the beginning of a panic attack. Geesh! 10 1/2 after the NICU and it came back that easily. Even as I am typing this post, the tears are there.

I was able to regain composure in enough time to actually listen to Paige asking such wonderful questions to the doctor that was operating the Simm baby. When she asked, "Is the blue light coming out of the baby's mouth supposed to signify lack of oxygen?", I almost lost it all over again. But, then the doctor praised her for her question and she turned to me with this bright, proud smile and I proudly smiled back, giving the thumbs up.

The best part was that Paige never realized what had happened to me.

Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months

**After talking with Helen, I have decided to make a separate post out of this study, which Helen cited in the comments of the previous post, as to make sure it doesn't get lost in another topic.**

Helen Harrison writes:

I have just seen a study In "Pediatrics" from the NICHD entitled "Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months" which contains some rather shocking (to me, at least) information, indicating that current outcomes are even worse than I thought.

[Gargas, Vohr, Tyson et al. Pediatrics 2009:112-121.]

This study looked at outcomes (both by gestational age and birthweight) of 5,250 children born weighing less than 1000 grams between 1998 and 2001 in NICHD study hospitals in the US.

"Unimpaired" was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking.

This study offers a new perspective on outcomes since "mild" (and sometimes "moderate")disabilities -- which most of us parents would consider fairly severe -- are lumped in with "normal", "unimpaired" outcomes when neonatologists and other professionals give outcome information to parents.

This is, as many of us have learned the hard way, highly misleading.

So the NICHD researchers set out to record just how many children were actually free of impairment by the criteria above, at age 18 to 22 months.

We parents also know that 18 to 22 months is much too early to determine some pretty devastating outcomes of prematurity -- autism, for example -- so even these numbers may be overly optimistic.

Here's what they found:

Less than 1% of children born weighing less than or equal to 500 grams survived to be normal(that is, "unimpaired" at 18-22 months).

From 501 to 600 grams it is about 5% unimpaired;
701-800 grams about 15 % unimpaired ;
increasing to 24% for infants 901-1000 grams.

By gestational age: <1% at 23 weeks are unimpaired;
< 5% at 24 weeks;
about 15% at 25 weeks, and
about 24% at 27 and 28 weeks.

(I'm reading some of this from a graph so I can't cite exact percentages.)

After 27-28 weeks gestational age, infants born at 1000 grams or less are small for gestational age as well as premature -- an additional risk factor -- and the percentages of unimpaired decline again, so that, for example, less than 20% of children born at 31 weeks weighing 1000 grams are unimpaired.