The Truth About Prematurity

If you took a poll of the number one pet peeve of preemie moms (and dads), I bet “hearing women complaining about those last weeks of pregnancy” would be really high up there.

Personally, my gut reaction when I hear someone complain is, “I would take any…A-N-Y!!!…amount of pain and discomfort to not have had my kids in the NICU”. I also think about my friends who struggle with infertility and how they must hate to hear people complaining about the one thing, they so wish they could have.

At the same time, I try to be reasonable. In some ways, it feels like it should be a God-given right to complain a little when you’re pregnant. I do get it. Okay, well not fully, both of my kids were preemies. However, I remember being 34 weeks pregnant and thinking, “wow, I’m going to get 6-weeks-more uncomfortable than this?” It’s no secret. The last weeks of a full term pregnancy are a mess of raging hormones, fluid retention, heart burn, Braxton hicks and real contractions, stretched, itchy belly skin, bladder/rib/back pain, you can’t see your feet and even if you could, your shoes don’t fit and then there are the, very embarrassing, things that your body is doing.

It really is conflicting for me, because I know these moms are not hoping their kids will be born sick. At the same time, I know that too many people don’t understand the importance of those last weeks of pregnancy. They don’t imagine feeding tubes shoved down the baby’s nose and IVs sticking out his head. When they say they are, “over being pregnant”, they don’t mean they would rather have the baby and leave him at the hospital until he is ready to come home. Maybe these moms haven’t seen data, like shown in this 2010 CNN Article, that states that at 34 weeks the risk of respiratory distress increases 40 (FOURTY!) times. Even at 37 weeks, there is a 3 times greater risk for respiratory distress than those who are born at 39-40 weeks.

I’ve really worked on removing the emotion and instead, sharing support for those moms nearing the end of a full-term pregnancy. I focus on not taking it personally, but also consider myself an advocate for premature babies and their parents, so I can’t ignore the statement either.

Here was my comment to someone who was having a frustrating pregnancy day yesterday:

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The comment that followed mine was by someone I do not know.  Nor, do I ever need to know.

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What the…?!  Is she endorsing late term prematurity because her kids are fine?

There are a lot of misconceptions about prematurity, so I wouldn’t be surprised to see something like, “my friend has a preemie, he’s fine…” but this isn’t a “friend” situation.  This is a two-time preemie mom saying it’s no big deal to have a preemie.

I can’t stand cyber-wars and I had nothing nice to say, so I simply responded with,

You’re a very lucky lady, [her name here].

But, of course I stewed.  I’m not going to skewer the person who said these things.  That’s not fair, she’s not here to defend herself and I have no idea who she is.  However, I am going to say that her answer is the exact answer I expect to hear when I talk about prematurity to people.  No, I don’t normally hear it from other preemie moms, but the misconceptions for the general population are unreal!

Absolutely unreal!

I’ve had several commenters on ANRC tell me to not be so hard on people who seem to gloss over the risks for premature babies because it’s done with good intentions.  While I do understand that it’s good intentions and I am not a proponent of personally attacking someone for saying things like, “most of these kids turn out just fine,” I also believe in the importance of advocating for these children and their families by sharing the truth about prematurity.

I’ve had to learn…the hard way…the truth about prematurity.  I know what prematurity looks like in its best cases and what it looks like in the worst cases.

I have a brother who was a preemie and a mother who has struggled with the guilt that she felt for his early birth.  My earliest childhood stories were about my mom going into labor with me at 31 weeks, but in my case, they were able to stop her labor and she was on bedrest for 6 more weeks.  I can see the vast differences in my childhood and adult life versus my brother’s…much of that due to me being lucky enough to have been born after he and so my mom was watched much closer.

I understand the deafening silence as you wait to hear your 34 weeker cry.  I have felt the frustration of being a mother, but not being able to decide when you can and cannot hold or care for your child.  I’ve lived the loneliness of leaving the hospital while my child stayed.  I have a reoccurring nightmare about someone attempting to shove a drinking straw down my nose as I try to process what it must have been like for my boys to have nasal feeding tubes.  I have cried for babies that died in the bed next to my son.  I’ve dealt with parent survivors guilt and the random nature of who does and who does not go home from the NICU.  I’ve been secretly jealous of how well another preemie is doing, and then later I’ve learned they are diagnosed with epilepsy or cerebral palsy or asthma or autism or ADHD.

But, in case you’re thinking that I’m just an over-sensitive preemie mom, don’t take my word for it, here are the truths about prematurity from the experts; March of Dimes (MOD), Mayo Clinic (Mayo) and Center for Disease Control and Prevention (CDC).  Links are provided with first fact from each resource.

The truth about prematurity is the risks are real. 

The truth about prematurity is it is a national and global crisis. 

  • 1 in 9 babies born in the United States is born too soon (MOD).
  • Worldwide, 15 million babies are born prematurely each year (MOD).
  • Pre-term birth costs the US health care system $26 Billion Annually (CDC)

The truth about prematurity is it often does not end when the baby goes home or when they turn two, or any other magical number. (Mayo)

  •  Premature children are more likely to have imparied cognitive skills and learning disabilities.
  • Preemies, especially those born before 30 weeks, may develop retinopathy of prematurity (ROP) which leads to 400-600 legally blind infants annually in the U. S.
  • Premature babies are at increased risk of some degree of hearing loss.
  • Children who experienced premature birth are more likely than full-term infants to have certain behavioral and psychological problems, such as attention deficit hyperactivity disorder, depression or generalized anxiety, and difficulties interacting with kids their own age.
  • Premature children are more likely to have chronic health issues including; Infections, asthma and feeding problems.
  • Premature infants are at increased risk of sudden infant death syndrome (SIDS).
  • For some premature babies, difficulties may not appear until later in childhood or even adulthood.

The truth about prematurity is, not enough people understand the truth about prematurity.

I will not spend any more of my energy stewing over an unfortunate comment on Facebook, but I will continue to advocate.  I will continue to correct people when they say, “most of these kids turn out fine” or, “it’s okay if the baby is a little early”. I will continue to wish friends a comfortable end of pregnancy, rather than a too soon end of pregnancy.

Sometimes I may seem annoyingly repetitive, or overly angry but I will not stop sharing the truth about prematurity.

Healthy babies are ABSOLUTELY worth the wait. 

 

 

 

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

13 thoughts on “The Truth About Prematurity

  1. Being a NICU mom… oh man. 132 days here. I’m going back to school to become a social worker, so I can help those families, like the kind people at my daughter’s hospital helped me. I want to be a voice, I was to be an advocate. Too many people don’t know. They need to.
    Anyway, thank you for posting this. I’ve come across my fair share of people who were like that.

  2. Often when I read your blog I think we must be related somehow.

    This is such an important post. Thank you. I feel profound ambivalence about others’ desire or need to push these facts under the carpet. Don’t get me wrong, for much of the past 12 months I have clung to the good luck stories. You know: ‘My nephew was born earlier than your son but is fine’; ‘My neighbour’s girl had brain bleeds too but she’s 6 now and top of the class’. I know these comments are largely motivated by kindness. But Mr Boo isn’t going to be fine in the sense they mean. He may well not be top of the class. And for every drop of kindness motivating these comments, there’s also a generous dose of discomfort, of not wanting to acknowledge the challenges Mr Boo and we as a family face, because it’s difficult to talk about. They don’t want or know how to talk about it. And why should they? I don’t blame people for this at all. But please, let us talk about it. Because, as you say, we need to advocate for our kids and those not yet born prematurely. If we don’t, who will?

  3. Well said as usual and made me think of a recent comment a someone said to met while I was getting my eyebrows waxed. She was asking how Sam was doing, Sebastian was with him. I was telling her about how his last check ups, etc. She said well you can think of it all positively being that you didn’t have to carry him to full term. You got out of the most of your pregnancy. I think if Sebastian wasn’t with me I would have flown into a rage really. Inside my head was screaming that I would have take anything to get him to close to full term and not spend 97 days in the NICU and not have yet another time of going home without your baby, etc.

    sorry not really about your post but it just brought that up.

  4. Exactly! This is exactly what has angered and upset me since we have started this journey. Before Jack was born, I had no idea. Now, I want everyone to know. I especially hate when I hear new preemie parents say that their 6-month old is meeting all milestones and has no side effects from prematurity. As if one can know the full impact at 6 months! It makes me wonder if medical professionals are also to blame when it comes to not creating awareness and educating parents? I used to think it was a media issue only, but now I’m not so sure. I do feel like all my education about prematurity (especially long-term issues) came from other parents and research I did on my own…and not from NICU staff.

  5. Thanks for all the great info Tatum! That persons comment makes me want to vomit. Maybe she should come see my 3.5 yr old 25 weeker who has extreme developmental delay. I think the best place for his brain to develop would have been inside my belly from 25 to 40 weeks. Good lord…people are morons.

  6. Once again I completely agree! Your one statement summed it all up. People just don’t understand enough about prematurity. Whether you sound angry or bitter or not the message needs to get out there. Yes we are very, very lucky to have our babies come home with us. But that was not without a hell of a lot of fighting, tears, prayers and so many impossible decisions. And let’s not forget discomfort that our babies went through to fight for their own lives. It’s not like being in an isolette is exactly paradise. Thank you for speaking up about his very important issue!

  7. Very nicely said! I feel the same way when people talk about being “over this” in reference to their pregnancy. I have made comments to friends (probably not as tactful as I would have liked). While I was pregnant an aquaintance on a message board was saying how she was tired of being pregnant at 25 weeks. Unfortunately, a few days later she suffered a tragic miscarriage. What you say can mean 100 different things and it is so scary to see the various outcomes that can happen.

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  9. You know, what bothers me is, anytime your reading about pregnancy and such, they never really talk about the NICU. I didn’t really know the NICU existed until we were there.

    They can’t even say they don’t wanna scare anyone ether. Anytime you look up say, a mild pain in the pelvis region during the first trimester, you have to read tons of very scary possibilities before you get to what it usually is. So, you know, every weird pain I got, I got scared.

    What bothers me more, is that the pregnant woman hand book, “What to expect,” only refers to prematurity once, at the beginning of every chapter after 24 weeks. All it says is “If your baby were born now, they could survive.” So, when I got to 37 weeks I was like “Hey, I got this far, its all good.” Now, I don’t think anything could have made me ready for the world I was entering, but, a heads up would have been nice. Maybe, a little bit of info if my child were born at whatever week, what could be done, what issues may rise, something?

    I think the thing is, that since its never really talked about much, most pregnant women assume that since they can save a baby if it is born after 24 weeks, that if they make it to 30 or farther, then everything should be ok. They don’t know about the NICU, no one ever talks about it, they don’t read about it, and since its out of “sight,” then maybe it is out of mind.

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  11. You are speaking the truth-im always amazed when preemies are left unscathed……until they reach school when the next batch of effects show up and then again in adulthood.

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