November is. Obviously I think prematurity awareness is an important public health/science/cultural issue, but it's also a strange one, because it encompasses several very different strands of experience. From a public health perspective one of the biggest and most potentially solvable issues is preventable near-term prematurity. This includes babies born at 36, 37, or 38 weeks by induction or c-section because a doctor or pregnant woman thinks it's time. Maybe the woman is feeling terribly uncomfortable, perhaps the doctor is seeing small signs that the woman or her baby are developing problems, or perhaps the doctor or woman want the delivery to happen within a particular timeframe.
Babies who come even a week or two early can have health issues related to prematurity, these issues cost money and cause personal stress. LB's three month NICU stay cost around $500,000, as best I could tell from the very confusing insurance forms, and even a short NICU stay costs a lot. So it's a issue, but not one that I find particularly relevant to LB's experience as a very early, very small preemie. It does irritate me when the issues surrounding preventable near-term preemies and unpreventable early preemies are conflated. A chipper "Keep those babies in Mommy!" makes me want to snap back with a "really, I should have waited until I was dead?"
Showing posts with label Neonatal ethics. Show all posts
Showing posts with label Neonatal ethics. Show all posts
Tuesday, November 27, 2012
Monday, July 23, 2012
More Preemie Reviews: Little Man: A Documentary Film
Badger was away this weekend trying to find us a new home, so I hung out with a baby, ate a chicken box, and watched the six part BBC documentary Auschwitz: Inside the Nazi State. Let it be noted that I did not do all of these thing simultaneously, and I may be a sick fuck.
I also watched the documentary Little Man. The film was made by a lesbian mom with a son by surrogacy, who was a micro preemie. This film was incredibly painful to watch. I've been watching a fair number of documentaries recently because we got a Roku, so I can watch any streaming Netflix content on our TV. After watching those films, I've decided I don't really like the first person documentary. As a genre, it's just too raw and emotional. I know that some people really like that unmediated quality, but I prefer documentaries that are more measured and analytical. Little man was very close to death multiple times in the film. Those episodes are presented quite graphically (they filmed while he was in the NICU), and that was hard to watch, but harder was the relationship between his two moms. I searched to see if they are still together, and was very surprised to see that they are. In the film, their relationship was in the land somewhere between non-existant and totally dysfunctional. Their conflict was centered around the fact that one of the moms had wanted to terminate the pregnancy when they found out that the baby was likely to have serious health issues, and the other mom insisted that they would continue the pregnancy. After the baby was born, the filmmaking mom continued to want a high level of interventions, while the other mom did not. Seeing the two of them react to each other from a place of anger, distance, and perceived superiority was just so upsetting. I don't know how B and I would have survived without each other, and I don't know how we would have a relationship now if we had failed each other in such a fundamental way during LB's early life. Overall, the film left me queasy and unsettled. I think some of the ideas embedded in the film about neo-natal ethics, family, and relationships is probably quite interesting, but I was too close to some of the subject matter to be able to consider those bigger ideas.
I definitely would not recommend this film for recent preemie parents.
I also watched the documentary Little Man. The film was made by a lesbian mom with a son by surrogacy, who was a micro preemie. This film was incredibly painful to watch. I've been watching a fair number of documentaries recently because we got a Roku, so I can watch any streaming Netflix content on our TV. After watching those films, I've decided I don't really like the first person documentary. As a genre, it's just too raw and emotional. I know that some people really like that unmediated quality, but I prefer documentaries that are more measured and analytical. Little man was very close to death multiple times in the film. Those episodes are presented quite graphically (they filmed while he was in the NICU), and that was hard to watch, but harder was the relationship between his two moms. I searched to see if they are still together, and was very surprised to see that they are. In the film, their relationship was in the land somewhere between non-existant and totally dysfunctional. Their conflict was centered around the fact that one of the moms had wanted to terminate the pregnancy when they found out that the baby was likely to have serious health issues, and the other mom insisted that they would continue the pregnancy. After the baby was born, the filmmaking mom continued to want a high level of interventions, while the other mom did not. Seeing the two of them react to each other from a place of anger, distance, and perceived superiority was just so upsetting. I don't know how B and I would have survived without each other, and I don't know how we would have a relationship now if we had failed each other in such a fundamental way during LB's early life. Overall, the film left me queasy and unsettled. I think some of the ideas embedded in the film about neo-natal ethics, family, and relationships is probably quite interesting, but I was too close to some of the subject matter to be able to consider those bigger ideas.
I definitely would not recommend this film for recent preemie parents.
Sunday, March 25, 2012
Queer families, neonatal ethics, and why we don't know anything about our rights
http://ellen.warnerbros.com/2012/03/carrie_and_rebeccas_emotional_story_0309.php
This heartwarming clip has been making the rounds on the internets. Ellen interviewed this (very sweet) lesbian couple, who are in danger of losing their home to foreclosure for all the reasons that so many families are struggling-job loss, medical expenses, past optimism, etc.
So Ellen gave them one of those oversized checks to help them out their debt hole and it was a feel-good moment. Except that, as a lesbian mom of a NICU baby, I was struck by their retelling of their daughter's first hours. Gestational mom had to have an emergency c-section because the baby was in distress. They moved so fast that they were not able to give her an epidural, spinal, or general (dear God!) and after the baby was out she passed out from the pain. The baby was thankfully viable, but needed some fairly urgent medical treatment. And this is where I got interested. The non-gestational mom (and I'm just going on what she reports on the show) says that the doctor in the NICU told her that he had determined the best course of treatment for the baby, but she could not consent to the treatment since she was not legally the child's parent or guardian. And so, the doctor would wait for the gestational mom to wake up and give consent. According to non-gestational mom, "Thank God she woke up in time."
The impression given in this video is that if gestation mom had not been able to consent to treatment, the baby could have been left to die, and that is simply not true. Neonatal ethics and law in the United States err on the side of treatment, and if there is no one available to give consent, doctors have both the right and the responsibility to go ahead and treat. Really the only time doctors can withhold treatment is when a baby is so early or so sick that their condition is judged hopeless. Even in these cases doctors often follow the wishes of the parents to withhold care or treat aggressively. So there is no chance in hell that a doctor would refuse to treat an infant with a good prognosis just because her mother was unconscious, unless he/she really wanted to be sued/reviled/and lose his/her medical license.
So why did non-gestational mom think that the baby might be refused treatment? It's possible that non-gestation mom is a deliberately inaccurate narrator. Maybe she was just trying to heighten the drama of the situation. It seems more likely that she simply did not understand the rules of the NICU and the doctor attending the baby did not explain the situation clearly. It is a terrible thing to let a parent think that her baby might die because of factors outside the parents control. If the non-gestational mom was given this impression then the NICU doctors failed to do their job. The doctor should have said, "we make every effort to get consent from a child's legal parent or guardian before beginning treatment, so we are going to wait a little while and see if your partner wakes up, but you should not worry about your daughter. Your daughter will receive the same standard of care as any other baby here, and if it becomes clear that we need to act before your partner wakes up we will do so."
I had Ladybug at 29 weeks. Most of the medical professionals Badger and I interacted with were both highly competent and very nice people, who wanted only the best for Ladybug. However, the present reality for queer parents seems to be that no one knows what the hell the rules are, and NICU's often don't understand what gay parents need in terms of information and support. Can a gay-married spouse who is also the non-gestational parent make medical decisions for a child-probably not absent a second parent adoption/guardianship agreement. However, most gay parents seem to think that a marriage certificate solves a lot of these problems. When do guardianship agreements kick in? We were never clear on this. In our case, because LB came so early, we had not signed our guardianship paperwork (or I should say, I had not signed), but I was never clear on whether this paperwork could be completed before the birth of the child.
Here in the United States, all of these issues are made more complicated by the differences of state law. Fifty sets of state laws makes it very difficult for families like ours to share information and learn from each other on the internets. Local LBGT lawyers are both the solution and the problem for queer families, and that will be a topic for an upcoming post.
This heartwarming clip has been making the rounds on the internets. Ellen interviewed this (very sweet) lesbian couple, who are in danger of losing their home to foreclosure for all the reasons that so many families are struggling-job loss, medical expenses, past optimism, etc.
So Ellen gave them one of those oversized checks to help them out their debt hole and it was a feel-good moment. Except that, as a lesbian mom of a NICU baby, I was struck by their retelling of their daughter's first hours. Gestational mom had to have an emergency c-section because the baby was in distress. They moved so fast that they were not able to give her an epidural, spinal, or general (dear God!) and after the baby was out she passed out from the pain. The baby was thankfully viable, but needed some fairly urgent medical treatment. And this is where I got interested. The non-gestational mom (and I'm just going on what she reports on the show) says that the doctor in the NICU told her that he had determined the best course of treatment for the baby, but she could not consent to the treatment since she was not legally the child's parent or guardian. And so, the doctor would wait for the gestational mom to wake up and give consent. According to non-gestational mom, "Thank God she woke up in time."
The impression given in this video is that if gestation mom had not been able to consent to treatment, the baby could have been left to die, and that is simply not true. Neonatal ethics and law in the United States err on the side of treatment, and if there is no one available to give consent, doctors have both the right and the responsibility to go ahead and treat. Really the only time doctors can withhold treatment is when a baby is so early or so sick that their condition is judged hopeless. Even in these cases doctors often follow the wishes of the parents to withhold care or treat aggressively. So there is no chance in hell that a doctor would refuse to treat an infant with a good prognosis just because her mother was unconscious, unless he/she really wanted to be sued/reviled/and lose his/her medical license.
So why did non-gestational mom think that the baby might be refused treatment? It's possible that non-gestation mom is a deliberately inaccurate narrator. Maybe she was just trying to heighten the drama of the situation. It seems more likely that she simply did not understand the rules of the NICU and the doctor attending the baby did not explain the situation clearly. It is a terrible thing to let a parent think that her baby might die because of factors outside the parents control. If the non-gestational mom was given this impression then the NICU doctors failed to do their job. The doctor should have said, "we make every effort to get consent from a child's legal parent or guardian before beginning treatment, so we are going to wait a little while and see if your partner wakes up, but you should not worry about your daughter. Your daughter will receive the same standard of care as any other baby here, and if it becomes clear that we need to act before your partner wakes up we will do so."
I had Ladybug at 29 weeks. Most of the medical professionals Badger and I interacted with were both highly competent and very nice people, who wanted only the best for Ladybug. However, the present reality for queer parents seems to be that no one knows what the hell the rules are, and NICU's often don't understand what gay parents need in terms of information and support. Can a gay-married spouse who is also the non-gestational parent make medical decisions for a child-probably not absent a second parent adoption/guardianship agreement. However, most gay parents seem to think that a marriage certificate solves a lot of these problems. When do guardianship agreements kick in? We were never clear on this. In our case, because LB came so early, we had not signed our guardianship paperwork (or I should say, I had not signed), but I was never clear on whether this paperwork could be completed before the birth of the child.
Here in the United States, all of these issues are made more complicated by the differences of state law. Fifty sets of state laws makes it very difficult for families like ours to share information and learn from each other on the internets. Local LBGT lawyers are both the solution and the problem for queer families, and that will be a topic for an upcoming post.
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