When Babies Are Born Too Soon - Resources and Reading

This Hub is dedicated to baby, Brionna Levine (August 11, 2010 - September 25, 2010), and to all babies who remain in Neonatal Intensive Care Units.

The first part of this Hub is a discussion about why I would dedicate a Hub to a baby I don't know personally. The second part of the Hub contains resources for people interested in learning more about premature birth in general, extremely premature babies, cerebral palsy (one potential complication resulting from premature delivery), and intraventricular hemorrhage (which Brionna has experienced). There are also links to discussions about medical ethics and about parents facing quality-of-life decisions. The medical-ethics discussions is offered by a young woman who, herself, was born three months early. (It's not my intention to encourage unrealistic hope in parents of very early premature babies, but somehow it seemed this young woman's contribution (via her blog) seemed worth sharing here.

Originally, this Hub was published ad-free because I'd written it for the purpose of contributing to more awareness of the problem of the very premature babies. It appears that the Hub either contained or contains material/links that would result in the Hub's being considered "commercial". Rather than unpublish the Hub, I have removed some of the previous links to the March of Dimes and allowed some limited ads.

Why I Wrote This Hub - Of The Luxury Of Minor Worries and Worlds That Suddenly Change In Terrifying Ways

Like most people (and sometimes more than most people), I have my share of "life's crap". If it isn't my own stresses and worries, it's the stress and worries of someone close to me. There is the big stuff, and there's the small stuff. Someone's doctor noticed something of concern. Someone else is likely to be laid off from his job because his company is in financial trouble. Someone needs new brakes on his car. Someone's cat has a lump that looks "suspicious". Life can be full of this kind of stuff sometimes.

Like so many other people, I take life a day and a time, sometimes feeling pretty fed up with having to "kill myself" to earn an income or feeling a little overwhelmed at the thought of things like a daughter's recent engagement and wedding plans, the economy, or even facing "yet one more uncomfortable 90-degree day. Oh, I have my more serious worries and complaints about life too. That's why I enjoy writing on HubPages (and other sites) in either my spare time, or else as an "alongside" when I'm working on some horrendous project that I'm not too thrilled to be working on in the first place. Most of the time (certainly not all) I take even my spare-time, "fun", writing fairly seriously. That's why I so often visit the HubPages forum. Now there's a place a person can fool around or have a discussion without worrying about traffic, capsules, or typing errors. Anyone who spends any time on HubPages starts to feel like he sort of knows other people in the HubPages community. Some people really do make friends. Others only feel as if they "kind of know" a lot of fellow Hubbers.

Don't get me wrong. I'm not nearly as miserable as my above remarks may seem to imply. There's never a time when I forget all the things that are right with my life. It's just that, particularly recently, I've been in kind of "slump" in the "delighted-with-life" department. I'm not someone who ever forgets what is truly important in this life. I'll admit, however, to sometimes getting a little too consumed with my own problems and worries.

A Little Girl I Don't Even Know

About two weeks ago, as I went back and forth between a tedious non-HubPages-related project and entertaining myself on the forums, a fellow Hubber with a familiar name posted in the forum that her daughter had given birth to a baby at only 24 weeks gestation. The Hubber is "kmackey32". I won't use her real first name here, only because I'm uncomfortable using someone else's real first name when she doesn't use it in her user name on the site.

In any case, I don't imagine I was the only one who read the post and was extremely sombered and moved to know someone I 'kind of know (sort of)" had this difficult thing happen in her life. I'm one of those people who has a "thing" about babies anyway, but ever since my own baby was born prematurely (although at a healthy 34 weeks and with only relatively minor problems in the beginning), I've always kind of felt "returned to the emotions" of having a premie whenever I hear about, or see, premature babies. A few years ago (I think) ABC's Nightline did a series on neonatal intensive care units and some of the babies who got their start in one; and although I know it's normal to feel moved looking a such tiny babies, I was kind of surprised when I just there, looking at the television, with tears rolling down my face. The thing was, I was only half crying for those babies. I had been transported back to a time when I was so absolutely terrified that it seemed like I was feeling it all all over again - only without the numbness Nature had provided me with as a way to keep my wits about me back when I really needed all the "wits" I had to deal with being so worried about my own premature baby.

My son is in his twenties now, and it isn't as if I spend all my time thinking about how he was a premie all those years ago. The whole experience had its own set of worries and issues, though, so even though I only think of it when I'm either talking about having my babies, or else when I hear about premies, it did leave its mark in its own way. Knowing how frightened I was that I'd never get to bring my baby home, and knowing how there were some medical consequences (as well as some non-medical ones) as a result of his premature birth; I couldn't even imagine what it must be like to be faced with having a premie born as early as 24 weeks.

As my mind seemed to race from my own memories of how frightened I was when my baby used up too many calories to gain weight, and when kept losing weight and losing weight to the point that I imagined him "withering away"; to trying to imagine how absolutely terrifying and sad it must be to have to face a premature delivery as early as 24 weeks; all those worries and stresses I mentioned above suddenly seemed so insignificant.

The March of Dimes - A Place in My Heart

Since I had my own premature baby the March of Dimes and the matter of prematurity has kind of been a cause of mine. Premature delivery has also been something I'd learned a lot about, not just because I had the one baby at 34 weeks. His little sister threatened to be born in October when she was due at the end of January. Even my doctor acted terrified for a couple of months. My point is, even though my daughter (also in her twenties) was born some time ago and before so many of today's medical advances had been made, I was well aware of some of the possible consequences of very early premature delivery. (By the way, my daughter made it to 37 weeks - quite an accomplishment for someone who threatened to be born so early.) After having one 20-week miscarriage and the premature baby, my daughter's reaching a healthy 37 weeks (even if she was only 5 lbs 13 ounces) not only seemed like a miracle, but let me know (for the first time in my life) that I was actually capable of carrying a pregnancy to a healthy 37 weeks). This is another consequence of having a premie (or a miscarriage) - you're left wondering if you'll ever have a normal pregnancy and delivery that doesn't involved loss or a couple of years of worry that a lot of other mothers don't live with.

For the days following the post about this tiny baby, I watched for any updates. I don't know what kind of progress I was watching for. In my head I knew this little girl and her family faced a long road ahead, at best. As I kept trying to get my mind around how kmackey and her daughter must have been feeling (again, I just have a "thing" about babies anyway), I thought about my husband's and my little 20-month old nephew who went into a coma from an infection and whose parents had to decide whether to remove him from life support. This was "only" a nephew, and I've always known there's no way I could know how his parents felt; but it was, without doubt, the worst thing my husband and I have ever been through in our lives.

Then, in my attempts to imagine how it must feel to have such a frail and tiny baby to worry about, I thought back to how after my nephew had passed away his mother and father had another baby, only to be faced with yet another crisis. Someone noticed that the three-month old baby didn't seem to move his arm. It would eventually turn out to be a form of cerebral palsy; but at the time, a doctor was concerned there could be something more serious responsible. He suggested the baby have a test to find out if he had something extremely serious. The horror of it all was that the test held the possibility of killing the baby. Not diagnosing the serious condition would mean not even trying to treat it if he had it. The parents were faced with the decision to risk a test that might kill their child but might also lead to some treatment (although it didn't hold much promise), or else take the chance that his problem was "only" cerebral palsy. They chose not to risk the test, and happily, it turned out the little boy had some relatively minor, cerebral-palsy-related, problems. He's a college student now, and having some problems on one side, as well as needing to control occasional seizures, are the extent of his birth-related problems. (By the way, this child was born quite late, rather than early.)

Within the last five years or so, a family member has lost two babies who were a few weeks younger than kmackey's little granddaughter. What this mother (in her thirties) went through was yet another kind of loss with all kinds of medical questions associated with it.

My point is, while I know there's no way I can even imagine what someone with a 24-week premie must be going through; I know how awful some of these "less serious" (for lack of a better term) or less complicated or less long-term situations can be; and I guess that's why just knowing about this little girl that I don't even know has made me wish (yet again, as I have so often since my son was born early) there was something more that could be done to help prevent premature births. After my son was born, and with that feeling that the first thing I did as his mother was to betray him by not being able to keep him safe for another six weeks, I searched for answers about why he was born early.

Some mothers have more risk factors than others. The only thing I could see that might possibly be associated with my baby's early arrival was that my mother had had a premature baby. I wasn't a teenager (one risk factor). My baby had been in a strange position, though, and I don't have a very big frame. I wondered if that might have caused it. Since he'd gotten to 34 weeks, he was big enough not to have room, particularly off to the side and with his legs straight up as he had been. It's now known that stress can contribute to premature delivery. I'm generally someone is very capable of dealing well with stress, but when I was expecting my son we had far more extreme stress than the usual kind. Three years later when my daughter threatened to arrive early the stress hadn't let up very much. I've always kind of believed it was the stress (and the "wrong blend of hormones" associated with it) that caused my tendency not to be able to carry a baby to 40 weeks.

I don't want to create the impression that I, a stranger to the people involved in this difficult situation with this fragile little baby, am here, borrowing the sadness and worry of people I only know about through the HubPages forums. I don't pretend, though, that I haven't been thinking about the baby from time to time, or thinking about her family, and wishing there were something someone could do to guarantee that all will turn out well. Of course, there are no guarantees of anything in this life; so there are certainly no guarantees in this situation. There's also, for the most part, nothing anyone other than the medical team can do (and even they can only do so much). This is, I guess, why it's so sad to imagine a mother and a grandmother going through this kind of thing. Even with a "big" and "old" premie, once your baby is no longer where he's still supposed to be and is, instead, where premies receive special care, you're in a kind of "club" nobody wants to be in, and getting out of that "club" takes time, even under the most promising of circumstances.

Whenever someone is going through a really difficult time, most of us wonder if there's anything we can do.

What Can Be Done To Help

Each year more than 500,000 babies are born to soon. Not all are born as extremely prematurely as this baby, but because premies born at 24 weeks are about as young as babies can born and still have the chance of surviving; I thought that one thing I might be able to do would be to try to create more awareness (to whatever extent I'm able to create it, and even if a lot of people are already very aware of the problem of premature birth) in her name. That's pretty much about all anyone can do right now, as far as doing something for this, or any other premature baby goes. March of Dimes research and campaigns may be able to eventually contribute to preventing at least some premature births in the future. For now, donating in the name of, or in memory of, a premature baby you know (or know about) can be a meaningful way to help in the fight against premature births.

Although none of us can do anything directly to help this one little baby, closer to "HubPages home", kmackey32's church is having a fundraiser to help the family with some of the expenses associated with having a baby in a NICU.


A virtual bracelet in the name of Baby Brionna Levine has been started on the March of Dimes website. Donations may be made in Brionna's name at the following link:

http://www.marchofdimes.com/prematurity/b_new.asp?band_id=63444

OR, anyone wishing to start a virtual bracelet (band) in the name of another baby can do so at the following link:

http://www.marchofdimes.com/prematurity/index_give.asp

Every baby is a miracle. Premature babies, even more so. Very premature babies are also tiny soldiers, fighting a battle for life each day until they get strong enough and mature enough that life isn't such a struggle any more. Some of these little soldiers win their battles. Some don't.

When I came home from the hospital after having my son, it was the loneliest feeling in the world to come home empty-armed, and with instructions to wear my hospital bracelet until we were able to bring him home. When my daughter was born, I had the amazing luxury of bringing her home (in the snow) while the flowers I'd received were still fresh and the pink balloons were still well inflated. My arms were full, but I found a way to wave the pink blanket to show my neighbor, sitting in the window, that I'd had a little girl. Every mother should have that luxury, and every baby should be strong and mature enough to be able to come home (even if bundled up) in a cold, Winter, snowfall.

Please consider making even a small donation to the March of Dimes.

I thought twice about posting this Hub because I didn't want to appear to be "imposing myself" on the people who are going through this crisis. Then again, I thought there was the chance that if other people (including me) called attention to Baby Brionna's birth, and to the difficult situation her mother, grandmother, and other family members face; maybe there was the chance to help in some way (even if that were only to encourage donations to the March of Dimes in Brionna's name) or else prayers.  (HubPages members will see the hint of humor I'm trying to share when I say that we all know, from the forum threads, that HubPages has lots and lots of faithful believers.  Hey, all you people, get off the religion forums and go start sending some more prayers up for Brionna!  :)  )

I'm not including a comments box here, because, as pretty much a stranger to kmackey32, and as a complete stranger to Kala (Brionna's mother) I'd like to step back, now that I've done what I could think of to maybe give a little boost in the direction of help (either for kala, her mother, or the cause of preventing premature births in general, I think it's appropriate that I not be returning to this Hub to respond to comments. My intent has been only to try to call attention to Baby Brionna's birth and what her mother, grandmother, and other family members face today (as well as to the matter of prematurity in general) - not myself.

This Hub has been published with the permission of kmackey32.

As the first anniversary of Brionna's passing approaches... thinking of Brionna, her mother, her grandmother, and others touched by Brionna's brief life.