Early premies: do they ever live normal healthy lives?

[Anonymous]

Anonymous wrote:I hear about doctors trying at all costs to save even the earliest-term premies and that this is a huge burden for the health care industry. I only know one personally. He is 4 now and suffers constantly from respiratory and GI issues and often requires hospitalization. I feel so badly for this family and when i am with them, I withhold the joy I experience with my typically developing child.

I am wondering: Is there hope? Do these children ever get stronger and live normal healthy lives? Does anyone have experience with older children who were born extremely premature? Thank you sincerely - I would love to know.

Word to the wise: parents of children with respiratory ailments do not expect you to "withold the joy you experience in your typically developing child." Nor do they want your pity.

[Anonymous]

Anonymous wrote:My daughter was born at 2 lb, 2 oz - small enough to be considered a micro preemie. Her first apgar was a 1, and she had a small hole in her heart and developed a small brain bleed. The doctors were not sure that she would live, and said that she would likely have severe disabilities if she did survive. The first uncertain weeks of her life were easily the darkest days of my life.

She's 10 now. She was just elected to student council, gets great grades in school, does martial arts and plays on a soccer team. She's still physically small and has a few small residual issues, but her mighty personality and zest for life more than make up for any challenges. I could not ask for a more wonderful child, and I am so very grateful to the doctors who went to battle for her.

While birth weight is important, it isn't what defines "micro preemie." Gestational age is the thing. A 2 .b 2 oz kid born at 28 weeks will most likely live a normal life (though there are complications). One born at 24 weeks will most likely not.

[Anonymous]

I love to hear stories about preterm babies that survive and live normal lives. Mine didn't, and most before the age of 25 weeks don't. (Race and gender play a role. Girls fare better than boys. African-Americans do better than Asians do better than Caucasians).

All these miracles-baby stories are noteworthy exactly because they are uncommon. And the truth is that both society and the parents do pay an astronomical cost to help as many babies as possible survive. That's as it should be. But I'd like to see more research and resources put into finding the cause and preventing early preterm birth -- because the reason for most of them are simply unknown at this point.

[Anonymous]

Amazingly my mom was born at 26 weeks from a mother who had Hepatitis and this was in 1955. It was a MIRACLE that she lived and even more remarkable that the only problem she suffers is that she has to wear contacts. Apparantly that is common for premies.

My mother is strong, athletic, and very intelligent.

Yes, premies do go on to live just like full term babies, EVEN premies who get only basic 1955 medical care.

[Anonymous]

Sure they do, but I agree with the PP and these stories are rainbows and sunshine.

A baby born 28 weeks, was very developmentally behind and extremely ill at the age of 2. His parents would drop him off at daycare vomiting!! No joke or so sick he couldn't breath without his special equipment. He was 2 and could not walk or speak. The daycare finally told his family to get special help because that is what was best for him. That was a very sad situation.

[Anonymous]

NP here. I have a question that may be bother post altogether. How long do you call a preemie a preemie? In other words, how long do you "make them" younger than they are? Or to put it another way, how long do you say well, so and so is really (this much younger) since she was born early? Do you stop after they catch up with their peers and say their age from the date separated from the womb?

[Anonymous]

Anonymous wrote:NP here. I have a question that may be bother post altogether. How long do you call a preemie a preemie? In other words, how long do you "make them" younger than they are? Or to put it another way, how long do you say well, so and so is really (this much younger) since she was born early? Do you stop after they catch up with their peers and say their age from the date separated from the womb?

I assumed it was only said (gestational age vs birth age) to explain the developmental delays. If there were no delays it wouldn't be an issue. I posted about the 2 year old and when I was told that and said 'oh I didn't realize he's a toddler' the mother said, 'oh well he's only 20 months by normal gestational age'. This boy even for "20 months" was very behind developmentally.

[Anonymous]

Anonymous wrote:

Anonymous wrote:NP here. I have a question that may be bother post altogether. How long do you call a preemie a preemie? In other words, how long do you "make them" younger than they are? Or to put it another way, how long do you say well, so and so is really (this much younger) since she was born early? Do you stop after they catch up with their peers and say their age from the date separated from the womb?

I assumed it was only said (gestational age vs birth age) to explain the developmental delays. If there were no delays it wouldn't be an issue. I posted about the 2 year old and when I was told that and said 'oh I didn't realize he's a toddler' the mother said, 'oh well he's only 20 months by normal gestational age'. This boy even for "20 months" was very behind developmentally.

It's called their adjusted age. In theory it's true forever, but for most premature babies actual age vs adjusted age difference are gone by 2. Also, the older you get the less the age differences matter: a 6 year old and a 6 year 3 month old aren't developmentally different.

[Anonymous]

The New Yorker article was very informative -- now I understand better why a friend had to quit working as a NICU nurse.

I guess every pregnant couple has to be aware of these things and try best to understand what to do, based on limited facts, if the baby comes so early.

As for the cost- now that health budgets get tighter, people are pointing all ways to say that this or that is not worth saving on level.

Yes, resources are always limited and there is always a moral question about whether it is more right to spend on this or that (why $1M + for a US-born 25-week preemie, when that $1M could pay for much-needed pre-natal care for hundreds of babies in Africa....)

It is all very complicated.

I've always wondered why people can't just purchase insurance that reflects their own wishes, and pay premiums commesurately. There are all sorts of other insurance options on the market so why not. The costs of healthcare for the pool of people who wish to extend life to the max extent-- will be very costly. For the pool of people who have a solid medical diretive, stating that they don't want to suffer, don't want heroic measures at the end-of-life-- will be much less expensive.

[Anonymous]

Saw this tonight and thought of this thread.

http://news.yahoo.com/second-smallest-preemie-u-could-going-home-years-135006438.html

[Anonymous]

Anonymous wrote:I've always wondered why people can't just purchase insurance that reflects their own wishes, and pay premiums commesurately. There are all sorts of other insurance options on the market so why not. The costs of healthcare for the pool of people who wish to extend life to the max extent-- will be very costly. For the pool of people who have a solid medical diretive, stating that they don't want to suffer, don't want heroic measures at the end-of-life-- will be much less expensive.

because insurance companies have become more smart. many people have coverage when the pregnancy starts, but then the insurance company finds a way to drop that coverage.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I've always wondered why people can't just purchase insurance that reflects their own wishes, and pay premiums commesurately. There are all sorts of other insurance options on the market so why not. The costs of healthcare for the pool of people who wish to extend life to the max extent-- will be very costly. For the pool of people who have a solid medical diretive, stating that they don't want to suffer, don't want heroic measures at the end-of-life-- will be much less expensive.

because insurance companies have become more smart. many people have coverage when the pregnancy starts, but then the insurance company finds a way to drop that coverage.

Check out the lifetime cap on your insurance policy. (Actually someone told me that Obamacare is forcing insurance companies to eliminate or raise these, but that wasn't the case when my micro-preemie was born). NICU care for 4 months plus the extraordinary required even after discharge will eat away at that very fast, and parents are often left in bankruptcy.

So on top of worrying that your child is going to die for months and months, you get to worry that you've been financially ruined. Because of our situation, I got to know many couples who now have hundreds of thousands in debt that they'll never pay off. And some of them don't even have the consolation of holding a baby. Healthcare in this country is so broken. Wish I had given birth in France.

[Anonymous]

Obama, Obama, Obama. Hows all that hope and change working fer ya? Thought so. If you voted for him, I really don't want to hear it.

[Anonymous]

To the PP, apparently the new laws are working for preemies.

There was an article in the Washington Post on the cost of premature birth and one thing that it mentions is most people supplement their insurance with state insurance. I will try to find the article and post it. I remember it well since it was around the time when my DD was born at 28.3 weeks.

FWIW, she is doing very well after the miracle workers at Children's Hospital.

[Anonymous]

In addition to not hearing about the bad cases (which are often the majority, especially with super premies), people aren't always aware of certain difficulties, even when the see children socially. My DS was a premie and has mild special needs. Relatives constantly praise how well he's doing ("he has no problems after all those difficulties when he was born!", etc.) He particpates in sports and is in a good school. However, he has struggled and received years of physical, speech and occupational therapies. Even close relatives/friends might post on here and say, "Oh, my [niece/friend/cousin] had a premie and he's handsome, smart, popular and doing great." While I love my son and I think he is doing great, he's had many challenges likely directly related to being a premie that have cost us and our insurance a fortune and required a lot of extra hard work on his part. Not necessarily a "normal" life.

This is my experience as well.