The nine-ounce micropreemie

[jenny_islander]

The thing that gets me about "this is too much money and also there is no quality of life" arguments is, Who decides whether somebody is having a decent quality of life? What if they can't speak? What if they aren't even here yet?

I have heard several first-hand accounts of women who were counseled to abort when the amnio showed their fetus to be positive for Down syndrome. Death is better than Down's, the doctors said. So the girl I went to high school with who busted her ass to get a B average should be dead instead of happily employed? The girl who regularly beat everyone else at cake decorating--she would be better off dead too? How about the guy who's been bagging groceries at Safeway for years? He's visibly slowing down and growing old early, a common hazard of Down syndrome. But he has friends, he has a job, he collects music and movies and goes out walking on sunny days.

Oh, yes, and all of these half-dozen or so accounts end, "What do you know, it was a false positive." Some of the moms aborted, some didn't.

[NurseNell]

The thing that gets me about "this is too much money and also there is no quality of life" arguments is, Who decides whether somebody is having a decent quality of life? What if they can't speak? What if they aren't even here yet?

I have heard several first-hand accounts of women who were counseled to abort when the amnio showed their fetus to be positive for Down syndrome. Death is better than Down's, the doctors said. So the girl I went to high school with who busted her ass to get a B average should be dead instead of happily employed? The girl who regularly beat everyone else at cake decorating--she would be better off dead too? How about the guy who's been bagging groceries at Safeway for years? He's visibly slowing down and growing old early, a common hazard of Down syndrome. But he has friends, he has a job, he collects music and movies and goes out walking on sunny days.

Oh, yes, and all of these half-dozen or so accounts end, "What do you know, it was a false positive." Some of the moms aborted, some didn't.

My neighbor had her baby 3 weeks ago. At 21 weeks they were told the baby had Downs and two heart defects. They had already lost 2 pregnancies to miscarriage. Some family members really pushed for abortion but the parents said no, this baby was meant to be. A few times Mom had to hospitalized because the baby was in congestive heart failure. She had 3 times/week ultrasounds. The baby was born 3 weeks early at 6 lbs 3 oz. There is no evidence of Downs. The atrial septal defect has closed. She will need heart surgery at 6 months for a rare defect but is home now, doing well. She was intubated and on a ventilator for only 3 days. I just met her today, she's beautiful. And she'd be just as beautiful and loved if she did have Downs.

[Witsec7]

The thing that gets me about "this is too much money and also there is no quality of life" arguments is, Who decides whether somebody is having a decent quality of life? What if they can't speak? What if they aren't even here yet?

I have heard several first-hand accounts of women who were counseled to abort when the amnio showed their fetus to be positive for Down syndrome. Death is better than Down's, the doctors said. So the girl I went to high school with who busted her ass to get a B average should be dead instead of happily employed? The girl who regularly beat everyone else at cake decorating--she would be better off dead too? How about the guy who's been bagging groceries at Safeway for years? He's visibly slowing down and growing old early, a common hazard of Down syndrome. But he has friends, he has a job, he collects music and movies and goes out walking on sunny days.

Oh, yes, and all of these half-dozen or so accounts end, "What do you know, it was a false positive." Some of the moms aborted, some didn't.

I think Downs is a different issue than micro premies, but I do want to address it. Many of us do not see it as a life limiting syndrome and recognize that in our society today Downs children can have a quality of life that wasn't available to them in the '50s when I was growing up. Some of my friends who had 'oopsie' pregnancies late in life did get tested for Downs, not with the intent of termination, but with the intent of preparation. I personally know three who delivered Downs children later in life, and I think each of them, due to their support networks know more.

I'm hard pressed to formulate an opinion on micro premies. That to me is an extension of reproductive choice, but expanded to include the husband. Its up to each family to decide the limits of care they want for a micro premie. Hopefully they make informed choices but its certainly not an area where my input is gonna matter in the least. In America (and perhaps other developed nations) we do have the huge costs of medical care, which may influence a parents choice. But it is their private choice, and I have no problem with any amount of my tax dollars being used to support care for these children.

[NurseNell]

I think Downs is a different issue than micro premies, but I do want to address it. Many of us do not see it as a life limiting syndrome and recognize that in our society today Downs children can have a quality of life that wasn't available to them in the '50s when I was growing up. Some of my friends who had 'oopsie' pregnancies late in life did get tested for Downs, not with the intent of termination, but with the intent of preparation. I personally know three who delivered Downs children later in life, and I think each of them, due to their support networks know more.

I know that Downs is seen more frequently in older women but strangely most of the Downs kids I've had in my school nurse practice were young mothers. One mother was 12, another 16, and several in their 20's. None in their 40's but a few in late 30's. My neighbor who just had the baby and whose prenatal diagnosis was Downs had an amnio, not just the blood test. She is in her 20's. Two co-workers of mine, nurses, had pregnancies between 38 and 42 but chose not to be tested because they knew they wouldn't abort (both were pro choice) and could deal with Downs. They had normal kids. I agree for some people being prepared is a reason for the testing. But the fact is the majority of mothers pregnant with Downs babies choose abortion, which is sad. I loved the Downs kids I worked with.

[Witsec7]

Nurse Nell do you have any citations to show that the majority of mothers of Downs choose termination?

I live in an area that is very supportive of Downs children and adults, folks actually move here from other states because of the quality of life and the support given to these individuals. So I'm curious about the stats. TY in advance.

[valsa]

The problem is who makes these decisions? Who is going to tell a parent - well yes, there is a 50% chance that your child could survive and lead a normal happy life but sorry, it's not worth the money?

More like telling them there's a 60%-80% chance your child could survive (depending on gestational age) and, if they do, there is a 30%-40% chance they could have a severe life-long disability.

It should be the parents' decision, just like all decisions about a child's health care (barring parents who've been stripped of their rights by the courts) However, they should be given accurate information by the doctors so they can make an informed decision. Like someone else said, for every one “miracle†story we hear about, there’s ten more disaster stories we don’t hear about. I’m guessing they’ll probably hold onto the good stories anyway, but they should at least know about the worst case scenario. And personally, I’d like to see research done about the practices and views of European countries where they spend less than us in these matters, to find out why. Do parents in those countries have different views on heroic measures? Do they have more or less information on long term outcomes (granted, we don’t have the best information even here) Do they simply not have access to the same degree of high tech equipment? Do they have better pre-natal care so they have less premature births?

Nurse Nell do you have any citations to show that the majority of mothers of Downs choose termination?

I live in an area that is very supportive of Downs children and adults, folks actually move here from other states because of the quality of life and the support given to these individuals. So I'm curious about the stats. TY in advance.

There are some anti-choice sites that talk about the "genecide" of Downs babies and they quote that 90% of Downs syndrome children are aborted but when you consider the source...

[Austin]

I believe these are intensely personal decisions and incendiary, hyperbolic anecdata does nothing to bolster anyone's argument. For every positive anecdote, someone can produce a negative one, and vice versa. These issues should be left to the parents and their medical advisors. I trust that everyone knows what they can handle and what they cannot. It's not my place to tell someone they have to raise a child they are not equipped to raise, or to tell someone that they should terminate. There is no black and white here.

[valsa]

Found the source of the 90% abortion rate for Downs Syndrome diagnosis. A 1999 study-

http://www.ncbi.nlm.nih.gov/pubmed/1052 ... stractPlus

[NurseNell]

Nurse Nell do you have any citations to show that the majority of mothers of Downs choose termination?

I live in an area that is very supportive of Downs children and adults, folks actually move here from other states because of the quality of life and the support given to these individuals. So I'm curious about the stats. TY in advance.

90%: http://carijean.hubpages.com/hub/Please ... rfect-Baby

90%: http://www.telegraph.co.uk/health/healt ... drome.html

87 to 95%: http://en.wikipedia.org/wiki/Down_syndrome

There are hundreds of web citations if you google % downs babies aborted.

I too live in a Downs friendly location, lots of support and services.

[Witsec7]

I've been googling the Downs stats and the earliest I can find is some English pubs that state 90-98% as of 2002. And yes, Valsa I agree this supposition is voiced frequently by the anti choice movement.

I think in America (supposition only) the culture of life has taken up the mantra of every sperm is sacred and ergo our citizens choose to spend extraordinary amounts of money to support the survival of micro premies.

I had a neighbor many years ago who had a micro premie who survived, with extreme disabilities. The child was on a feeding tube, never able to walk, blind and deaf. Because of their religious beliefs they chose to use extraordinary measures to ensure his survival. There was a child 5 years older already in the home. The parents made the decision to bring their son home and raise him with his sister. The sister was immediately enlisted as a care giver, and as a result denied a 'normal' childhood. She ran away as an adolescent never to be heard from again. The parents to this day are caring for a severely disabled child who is now physically an adult in their home. He's around 25. They have endured numerous medical emergencies over the years. Both parents agree they have no quality of life themselves but that this was all gods plan.

[Sola]

My neighbor had her baby 3 weeks ago. At 21 weeks they were told the baby had Downs and two heart defects. They had already lost 2 pregnancies to miscarriage. Some family members really pushed for abortion but the parents said no, this baby was meant to be. A few times Mom had to hospitalized because the baby was in congestive heart failure. She had 3 times/week ultrasounds. The baby was born 3 weeks early at 6 lbs 3 oz. There is no evidence of Downs. The atrial septal defect has closed. She will need heart surgery at 6 months for a rare defect but is home now, doing well. She was intubated and on a ventilator for only 3 days. I just met her today, she's beautiful. And she'd be just as beautiful and loved if she did have Downs.

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!

[lovefromgirl]

I know that Downs is seen more frequently in older women but strangely most of the Downs kids I've had in my school nurse practice were young mothers. One mother was 12, another 16, and several in their 20's.

One mother was 12?!

Hang on, isn't that a little sadder than the number of Downs babies being aborted?

[NurseNell]

One mother was 12?!

Hang on, isn't that a little sadder than the number of Downs babies being aborted?

it was sad in that the mother was molested by a family member. She had an outstanding school nurse who really became her advocate. The mother parented her child, both of them living in a safe foster home. She did very well in high school and is now in college. She has been invited to Washington DC at least once to speak about young teen mothers and how all the community resources she availed herself of saved her life and that of her son. I haven't seen her in a few years, she was considering both nursing and being a special ed teacher. She was an amazing young student and mom.

And the 16 y.o. mom, who had a total of 3 children before her 18th birthday (her Downs' son was her middle child) now works in special ed as a classroom assistant and also does PCA work.

edited to change 9 and 0 to ( and )

[MLizabeth]

I'm the mom of a growth restricted 29week preemie (2lb 2oz). Having her has really challenged some of my views someone who is pro-choice and a medical pragmatist (although I'm still both). I totally agree that for babies in the 22-24 week range there are tough issues for parents and doctors, and hopefully those parents are getting good, compassionate advice and they make choices for their child. Since I had my daughter, and started paying attention, I've been amazed by the number of times I've heard the phrase "let nature take it's course." I read that phrase on a natural birth blog, where the author was saying that if she gave birth at home to a baby of my daughter's gestation, she would consider not going to the hospital-basically because the NICU is so horrible and medical and she wouldn't be able to nurse her toddler while caring for a NICU baby. I just wonder if people realize that many preemies, even very young ones, are born pink and breathing, so "letting nature take it's course" means watching a baby die over a period of minutes or hours. Before I had my daughter, my inclination would have been to say, of course you want to take the hospice approach, but now I just can't imagine being in a room of people doing nothing as a baby died.

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

[DistantStar]

My understanding is that more Downs kids are born to younger women because younger women have more babies, but the odds of it happening per preganancy go up the older you get. Kind of two different things going on at the same time.

[NurseNell]

My understanding is that more Downs kids are born to younger women because younger women have more babies, but the odds of it happening per preganancy go up the older you get. Kind of two different things going on at the same time.

This is my understanding also.

[Bella99]

Hate being all grim, but money would have played a huge part in our family's decision making. We only have 1 child because when the timing was right, Mr. 99 was out of work and infertility treatment is expensive. Her Maj is 8 yo and thanks to asthma, ADD, and the machinations of the insurance industry, is uninsured. We would never have been able to provide financially for a child with severe special needs.

[Rosa]

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

Aren't they halfway there? My son's six, and when I was diagnosed with pre-eclampsia at 24 weeks, the hospital showed us a big book of preemie pictures at different gestational ages. Even then, some of the kids born so early their skin wasn't all the way formed, they were covering them in gel and the nurses said it was so much better than just a few years earlier. A gel-and-oxygen sac for the really little ones, who are already intubated and tube-fed and unable to be held, seems like the logical next step.

When my son was born (34 weeks, not really that early at all), there were a few babies in the nursery who could only be held for a certain number of minutes/hour, and we weren't even in the NICU, we were one level down in medical urgency.

That said: the original question, about people expecting miracles - I don't think parents do, especially if you have a high-risk pregnancy and get all the education around preterm birth. But other people - extended family, media, people like that - often seem to already.

[Hane]

I'm the mom of a growth restricted 29week preemie (2lb 2oz). Having her has really challenged some of my views someone who is pro-choice and a medical pragmatist (although I'm still both). I totally agree that for babies in the 22-24 week range there are tough issues for parents and doctors, and hopefully those parents are getting good, compassionate advice and they make choices for their child. Since I had my daughter, and started paying attention, I've been amazed by the number of times I've heard the phrase "let nature take its course." I read that phrase on a natural birth blog, where the author was saying that if she gave birth at home to a baby of my daughter's gestation, she would consider not going to the hospital-basically because the NICU is so horrible and medical and she wouldn't be able to nurse her toddler while caring for a NICU baby. I just wonder if people realize that many preemies, even very young ones, are born pink and breathing, so "letting nature take its course" means watching a baby die over a period of minutes or hours. Before I had my daughter, my inclination would have been to say, of course you want to take the hospice approach, but now I just can't imagine being in a room of people doing nothing as a baby died.

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

Bolding mine. This is exactly why I am so torn and confused by health care options for an extreme micropreemie. In my opening post, I purposely did not bring up the idea of monetary cost--I object to the "whose life is financially worth saving?" arguments. I worry about the suffering these children might be forced to endure, for however long their lives are.

Chromosomal defects are another matter entirely. An acquaintance of mine chose to terminate a pregnancy when she learned that her child had Turner syndrome, fearing that her daughter could not grow up to live a normal life and would inevitably have cognitive delays. I chose not to mention to her that one of my daughter's college classmates had Turner's. As many of us have pointed out here, nowadays there is a great deal of support available for children and adults who have Down syndrome.

I don't find the concept of an artificial womb offputting at all--to me, it's no more "unnatural" than a pacemaker, a mechanical heart valve, or an artificial joint. In fact, I believe that the artificial womb may well be a reality in a generation or so.

[Mama Mia]

http://www.usatoday.com/news/health/200 ... ival_N.htm

This is a study done in Sweeden regarding very early preemies and survival rates. The survival rates seem to be much higher than the ones I skimmed on other sites. Universal health care and prenatal care could be a factor. Another factor, I would think, could be that KNOWING you will be able to receive long term medical care for your child regardless of health issues might make a parent more willing to go for heroic measures. That is just speculation on my part

[valsa]

As many of us have pointed out here, nowadays there is a great deal of support available for children and adults who have Down syndrome.

I think people should be fully informed of both the pros and the cons of any medical decision. However, knowing about the support for Downs Syndrome doesn't mean people wouldn't choose to still abort. I live in a fairly good area for special needs children but if I got a prenatal diagnosis of Downs, I would get an abortion. I think it's dangerous to have the frame of mind that "Oh, if they're informed, of course they'd keep the baby".

[valsa]

http://www.usatoday.com/news/health/2009-06-02-prematurebabies-survival_N.htm

This is a study done in Sweeden regarding very early preemies and survival rates. The survival rates seem to be much higher than the ones I skimmed on other sites. Universal health care and prenatal care could be a factor. Another factor, I would think, could be that KNOWING you will be able to receive long term medical care for your child regardless of health issues might make a parent more willing to go for heroic measures. That is just speculation on my part

I think that not only does the availability of long-term medical care impact that Swedish statistics, but also the strong social programs. There's more assistance if one of the parents has to quit their job to care for the child, etc.

I'd be very curious to see the follow-up study of disability mentioned in the article.

[lovefromgirl]

it was sad in that the mother was molested by a family member. She had an outstanding school nurse who really became her advocate. The mother parented her child, both of them living in a safe foster home. She did very well in high school and is now in college. She has been invited to Washington DC at least once to speak about young teen mothers and how all the community resources she availed herself of saved her life and that of her son. I haven't seen her in a few years, she was considering both nursing and being a special ed teacher. She was an amazing young student and mom.

And the 16 y.o. mom, who had a total of 3 children before her 18th birthday (her Downs' son was her middle child) now works in special ed as a classroom assistant and also does PCA work.

edited to change 9 and 0 to ( and )

I hope to hell that 12-year-old had a choice once she got out of that horrible situation. Not only did she have to parent the child of her own rape, she did it while she was still in dire need of parenting herself. Jesus, what is wrong with the world? Even if the child had been perfectly healthy, carrying to term at 12, especially under those circumstances, seems more like a punishment from here.

Dare I ask how old the other mother was when her first was born? And why, for the love of Dog, nobody was alarmed by the prospect of having three kids by the time she was 18?!

You got damn lucky that they turned out okay (though that's debatable in the second case--seriously, conceiving her third by 18, what the hell?).

[kayray]

I think people should be fully informed of both the pros and the cons of any medical decision. However, knowing about the support for Downs Syndrome doesn't mean people wouldn't choose to still abort. I live in a fairly good area for special needs children but if I got a prenatal diagnosis of Downs, I would get an abortion. I think it's dangerous to have the frame of mind that "Oh, if they're informed, of course they'd keep the baby".

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.

[JesusFightClub]

I have a cousin with Turner's, and she does fine (you would not really know) but she can never have babies. She has some very mild learning problems, but the no babies thing was sad for everyone when her parents had to explain.

Valsa, I totally agree with your point. It's not just the educating. People know if they can deal with a disabled kid or not, and with Downs it is a fucking huge commitment. If you can't, you can't, and no shame in that.