The nine-ounce micropreemie

[SeaSaltCaramel]

I am amazed at what neonatologists and neonate nurses do with these micropremies. I watched the documentary "Little Man," and it brought tears to my eyes. It was hard to watch the toll it took on the family, but the advocate that baby boy had in his mom was beyond words. I'm an RRT with a neonatal/pediatric specialty, so this topic is always of great interest to me. To see how these babies fight for their lives is simultaneously inspiring and heart-breaking.

A friend of mine has 3 kids. All were premature, but her second child, a daughter, was born at 21 weeks. She and her husband made her a DNR at one point during her NICU stay because she had multi-organ failure. My friend even had her daughter's "funeral dress" picked out because there was such little hope of her survival. Imagine my friend's surprise when the nurses told her to start getting things ready to bring her home! Her daughter is 6 now, and while she only has a 6" field of vision, she's spunky, smart, loves to sing, and even got a bike for Christmas. The rest of my friend's story is very interesting. While she was with her daughter in the NICU, they found out why she was delivering prematurely. Her body saw her pregnancies as a "foreign enemy" so her body started throwing blood clots into her placenta. She was at a Catholic hospital for all of this, so they wouldn't tie her tubes (and she was begging them for them to do so), and since she has the fertility of Michelle Duggar, she ended up getting pregnant again. Her 3rd (and last) child, a son, was born prematurely, but not as early as her daughter. He's already bigger than his sister.

It's definitely a case by case, and sometimes, a moment by moment situation with micropremies. I'm very encouraged to see the advancements they make for these little fighters.

[pixydust]

I've got a bit of a soft spot for Downs anyway :) My ten year old daughter's one and only friend in the whole wide world is a 14 year old boy with Downs. He loves her and adores her, cares not that she is autistic and can't walk well and they have both given each other a piece of their hearts by having a kiss on the cheek :D He has already proposed to my daughter, and gave her a bracelet. They plan a pink wedding, with Abba songs and pink cake at the reception!

Sola, I love your daughter and her BFF! They sound like some seriously awesome kids! And the wedding sounds like it will be beautiful.

[pugglemama]

I've had four preemies. They were 36 weeks, 33 weeks, 20 1/2 weeks, and 31 weeks. Due to some issues between #2 and #3, I developed an incompetent cervix so I ended up partially dilated with no warning at 20 weeks. My water broke and I developed a severe infection and had to stop attempts to stay pregnant and instead be induced to deliver a baby that the hospital (pro-life Catholic hospital) refused to attempt resuscitation simply because she was under their 24 week cut-off. When she was born, she was alive which they told us was unlikely, took breaths which they told us would be impossible, and lived for two hours which they told us wouldn't happen. The doctors told us she would most likely be stillborn or live for only a few minutes after birth. I begged the doctors to try to save her and they told me no, then left the room while my baby died in my arms.

Intellectually, I know that there is a 0% survival rate for 20 week preemies. I know if she had somehow managed to survive, she would've most likely had major disabilities. But she's my baby. I'd rather have her here, giving her constant care and having no life of my own, than to not have her. My baby's life didn't have a price tag, nor was there a threshold of "quality of life" that meant she was better off dead.

To the previous poster who mentioned the murderer label for those who would "let nature take its course," it would happen. It does happen. When I delivered my daughter, the doctors had to get permission from their ethics committee, being a Catholic hospital, that basically it was okay to save my life because either way, the baby wasn't going to survive. Despite that knowledge, I have been told by people that allowing an induction was an abortion because I knew she could live on her own, that a true mother will die for/with her child, etc. It's sickening. Let's just forget that I had two other children at home that needed their mother. People have no idea what it is like to have to make these decisions until they are the one making them. Even Super Pro-Lifer Rick Santorum's wife delivered a baby who was too small to survive, but you know, for her, it was okay. And apparently it was okay for the pro-life hospital to allow my baby to die while she struggled to live.

[MLizabeth]

How devastating pugglemama. I'm so sorry that that happened to you and your baby,

[genericJname]

I have very mixed feelings on this. I think generally it needs to be a case by case basis as a joint decision between the provider and the family. There is this website: http://www.nichd.nih.gov/about/org/cdbp ... o_case.cfm

that can figure likelihood of outcome based on gender, gestation, weight and whether steroids were given.

Personally, I lean on the side of less intervention based on my personal experience. I have never had a preterm baby but I do have a son with a severe heart condition. Because he was not prenatally diagnosed, I was never given any options in his treatment as a newborn. I am still do not know if I think it was ethical to treat him or not. He was defaulted into one option and then had a bad course and eventually needed the second option as well. He is very functional and has a good quality of life now but I still don't know whether all the horrible pain he was forced to endure was acceptable. I just wish I had been given the option as to whether or not to treat. Even if we did decide to treat him, I think it would have felt more empowering that we were trying to save him, rather than feeling like he had all sorts of painful interventions forced on him.

[nolongerIFBx]

I think the next stage of medical technology must be some kind of artificial womb, which seems creepy and matrixy.

I know someone who has done a lot of research with opossums and he talked about how they studied the conditions of the pouch with an interests toward incubators for preemies. Possum babies are born at 3 weeks gestation (if I remember right) and migrate to the pouch where they attach to a nipple and stay there until they are ready to come out. Really interesting!

[sableduck]

My sister was born at 22 weeks in 1993. 12 ounces, ten inches long. My parents refused to let the hospital do a press release because they did not expect her to make it, and then didn't want to exploit the situation or their large, homeschooled family(note here: my mom thinks the Duaggars are ridiculous). There was an infection and my mom's water broke, and the baby simply had to be delivered. They were just going to let her go and do no resuscitation, but she was born pink, breathing, and began to cry(though it was like a kitten's mew, she was able to cry). At that point they requested everything reasonable be done, though no CPR. They wanted to let her go with dignity if she wasn't going to make it, but wanted to give her a change. SHe is now almost 19, and while she has learning disabilities and mild CP, she will probably be able to lead at least a semi-independent life, will graduate from high school, and will probably be able to do some college.

So it can hapen, and now the age of viability has been pushed further and further back.

[Feberin]

I'm currently pregnant and chose to have an ultrasound and bloodwork done to find out my risk for Downs and trisomy. If the Downs risk had been high I would have continued with the pregnancy but would have done more research and found out what was available to me in my area. I'm not sure how how I feel about the heroic measures with micropremies. I mean the line has to be drawn somewhere we can't be trying to save a 15 weeker or anything. But I think it's the parent and doctor's choice not something that we need across the board regulations.

[Feberin]

I'm currently pregnant and chose to have an ultrasound and bloodwork done to find out my risk for Downs and trisomy. If the Downs risk had been high I would have continued with the pregnancy but would have done more research and found out what was available to me in my area. I'm not sure how how I feel about the heroic measures with micropremies. I mean the line has to be drawn somewhere we can't be trying to save a 15 weeker or anything. But I think it's the parent and doctor's choice not something that we need across the board regulations.

[Queen of Serpents]

I was a micropreemie!

I was born at 24wks, 680g (about a pound and a half) in 1988. My mom remembers the doctor briefing her about my chances of survival and disability, and the nurse swooping in after the doctor left to reassure her that I'd be fine. I have a physical disability that I don't really have a concrete diaganosis for, neuropathy, which my new doctor tells me is probably due to my prematurity and can be really varied in people. It affects my fine motor skills. I may have some of the stereotypical personality traits, but I just think I'm a mopey nerd. I did alright in school and college and now I'm working at the ARC doing direct care with seniors with developmental disabilities.

My concern would be that the parents have the resources they need as the child grows and that there are good agencies when the child becomes an adult. I've learned a lot about the different day programs within the agency, different staff, and heard things about other agencies. I'm biased, but it sounds like the ARC is one of the better agencies in my area. In our staff orientation group they touched upon sexuality and LGB individuals with a developmental disability, which really impressed me, I doubt other agencies emphasize sexuality. The room I work in at a day service site has adults with a wide range of needs, from individuals with dementia, to individuals who missed the "normal" IQ mark by one point, are very high functioning, and flirt and joke with staff. Every individual I work with is beautiful and has enhanced my life and I work hard to make their days at program exciting.

But I'm also seen staff that don't care and are rude to their individuals, and I've heard horror stories about group homes, and been a part of arguing with group home staff that don't take care of their guys. My room has been ridiculously short staffed and a few months, doctors have taken our guys off of meds and that has affected their mood greatly. Some instances still break my heart. It's frustrating and if I ever had a kid with a developmental disability, I would be afraid of the care they would receive. I would try to be the best advocate that I could, but I know I would always be afraid that staff would not be providing the quality care my loved one deserves.

[Queen of Serpents]

I have a cousin with Down's. He was born before such screening. He is in his 40s, has a job, is active in Special Olympics and very outgoing. He has always adored me (I am a few years younger). However, he also has the mental age of a 6-7 year old, has had numerous health problems since his birth, and still is dependent on his parents who are in their 70s and will be until either he or they die. Their focus always had to be more on this child over others due to the issues. Sure there is support. There is also incredible stress, worry, financial worries, health consequences and so on.

Yes, I have met some delightful children with Down's, but many of them will remain dependent forever, and tax a family's financial and emotional resources in the long run.

Knowing what I know from my family's experience, I can fully understand anyone who chooses to abort after a prenatal diagnosis of Down's. I have decided not to have kids, but I always believed I would do the same in that position.

One of the favorite individuals I work with has Down's Syndrome and dementia. He's in his 50's and his parents are starting to accept his dementia diagnosis. He's still very vivacious and is a big flirt. I think dementia occurrences are higher in developmentally disabled populations and for those with Down's, dementia can be diagnosed earlier. His decline has been heartbreaking, and I've only worked with him for a year. I can't imagine how his parents feel. He lives in a group home and he visits his parents every weekend and they go out to dinner.

[Mommy22alyns]

A pre-birth Downs diagnosis isn't always accurate, especially in the case of Mosiac Downs. The percentage of cells affected can be tiny and often you cannot tell that the person has Downs - sometimes if there hasn't been testing during the pregnancy, you might not find out that the child has Downs until they are 4 or older and the child shows some mild cognitive deficits at school.

I've got a bit of a soft spot for Downs anyway :) My ten year old daughter's one and only friend in the whole wide world is a 14 year old boy with Downs. He loves her and adores her, cares not that she is autistic and can't walk well and they have both given each other a piece of their hearts by having a kiss on the cheek :D He has already proposed to my daughter, and gave her a bracelet. They plan a pink wedding, with Abba songs and pink cake at the reception!

Have to say, this is the sweetest, most adorable thing ever!!

[Mommy22alyns]

I've had four preemies. They were 36 weeks, 33 weeks, 20 1/2 weeks, and 31 weeks. Due to some issues between #2 and #3, I developed an incompetent cervix so I ended up partially dilated with no warning at 20 weeks. My water broke and I developed a severe infection and had to stop attempts to stay pregnant and instead be induced to deliver a baby that the hospital (pro-life Catholic hospital) refused to attempt resuscitation simply because she was under their 24 week cut-off. When she was born, she was alive which they told us was unlikely, took breaths which they told us would be impossible, and lived for two hours which they told us wouldn't happen. The doctors told us she would most likely be stillborn or live for only a few minutes after birth. I begged the doctors to try to save her and they told me no, then left the room while my baby died in my arms.

Intellectually, I know that there is a 0% survival rate for 20 week preemies. I know if she had somehow managed to survive, she would've most likely had major disabilities. But she's my baby. I'd rather have her here, giving her constant care and having no life of my own, than to not have her. My baby's life didn't have a price tag, nor was there a threshold of "quality of life" that meant she was better off dead.

To the previous poster who mentioned the murderer label for those who would "let nature take its course," it would happen. It does happen. When I delivered my daughter, the doctors had to get permission from their ethics committee, being a Catholic hospital, that basically it was okay to save my life because either way, the baby wasn't going to survive. Despite that knowledge, I have been told by people that allowing an induction was an abortion because I knew she could live on her own, that a true mother will die for/with her child, etc. It's sickening. Let's just forget that I had two other children at home that needed their mother. People have no idea what it is like to have to make these decisions until they are the one making them. Even Super Pro-Lifer Rick Santorum's wife delivered a baby who was too small to survive, but you know, for her, it was okay. And apparently it was okay for the pro-life hospital to allow my baby to die while she struggled to live.

I'm so sorry for your loss. :(

[NurseNell]

I was a micropreemie!

I was born at 24wks, 680g (about a pound and a half) in 1988.

I'm glad you are here. :P Your input is especially valuable.

Have your doctors tried Neurontin for your neuropathy? I have a few friends on it for post chemo neuropathy.

[Queen of Serpents]

I'm glad you are here. :P Your input is especially valuable.

Have your doctors tried Neurontin for your neuropathy? I have a few friends on it for post chemo neuropathy.

Technically my documents say "suggestive neuropathy," so I never got an actual diagnosis and all I was really told was to do some fine motor exercises. I've neglected my exercises for a while so I may pick them up again. I also went to the free PT clinic in college and one of the students working with me thought that was moving funny. Like I would reach for something and I would move my hand first, then wrist, elbow, shoulder, etc instead of the other way around. I know my mom also had PT for me when I was an infant, but she cancelled services rather early on, so I wouldn't be surprised if I had trouble processing how to move. I know I hated gym class!

And it's not pain as much as tiredness in my upper extremities, primarily my right hand. Right now I'm just trying to get back into the swing of things at work. A part of my intestines formed incorrectly, so I had surgery to correct that when I was baby. I was fine for years until about September where I ended up having blockages and I had surgery in October. Turns out the scar tissue was to blame, so I had adhesions and scar tissue removed. But the good news was I was high on painkillers for around a month and found this site! I returned to work around Thanksgiving.