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. 

 

 

 

Popular Cliches Translated

McCloskey

Say What?!

Sometimes the really nice thing you meant to say, isn’t what I heard at all.  If you just used a cliché, that’s probably especially true.  It, in all honesty, is a two-part problem.

First there’s me. I’m what Ellen over at Love that Max, calls a warrior mom.  Nearly all mom’s battle for their kids; special need moms battle for their kids almost every day.  That makes me a little defensive.  Then throw in that the reason my son has special needs is because my body failed him.  (That’s not guilt speaking.  That’s truth.  Owen was born more than 15 weeks early because my body failed at being pregnant.)  This truth adds some fragility to my mindset.  Whether I know clichés are intended as good or not, there is always this part of my mind that also sees the negative in them.

The other part of the problem is that clichés have become…well… very cliché.  They are used when people don’t know what else to say.  So, they pull out something they’ve heard before and hope it fits.  At best they are empty words.  At worst, if you really think about the words that are in clichés, they often say exactly the opposite of what is truly meant.

So here it is, my really honest breakdown of some of the most frequently used clichés and my positive and negative interpretations of them.

Cliché:  “He just wanted to come early, didn’t he?”

What I am pretty sure you meant:  “Wow, he was incredibly early.  It’s really hard to wrap my head around a baby this small.  This is scary but I’m going to keep up my hope for you.”

What I couldn’t help but hear:  “This is all his fault.”

Cliché:  “This kid has really put you guys through the wringer, hasn’t he?”

What I am pretty sure you meant:  “Your family has been going through an unbelievably difficult time.  I don’t understand why these things happen, but I hope it gets better for you soon.”

What I couldn’t help but hear:  “He is bad”

Cliché:  “When I’m having a tough day, I just think about you guys and know I have a lot to be thankful for.”

What I’m pretty sure you meant:  “I really admire your strength and positive attitude through this difficult time.  You’re a great example of finding the good, even during the hard times.”

What I couldn’t help but hear:  “Your life sucks.  I wouldn’t want to be you.”

Cliché:  “This has been a real roller coaster ride, hasn’t it?”

What I’m pretty sure you meant:  “Your family has been through a lot of ups and downs.  I hope it’s more ups than downs soon.”

What I couldn’t help but hear:  “Wahoo, let’s go to Six Flags!”

Cliché:  “These things happen for a reason.”

What I’m pretty sure you meant:  “I don’t know why these things happen, but I do believe you have the power to make the best out of a difficult situation.”

What I couldn’t help but hear:  “Your son is the sacrificial lamb of a lesson you needed to learn”

I’m sorry if I just rained on anybody’s parade of best lines to use when someone is going through a difficult time.  It’s important to emphasize that I have zero ill feelings towards anyone that has said any of these phrases to me.  I do understand it’s hard to know what to say and I can interpret the positive intentions.  To make it even trickier, this is MY list.  We all have our own list.  Here is one Jessi wrote over at Life with Jack (I agree with many of hers, by the way).

You’re probably reading this and thinking, “but what should I say?”  Here’s my advice 1) say something and 2) make it come from your heart.  What comes from your heart may be, “I have no words.”  And that’s okay.  I’m 21 months in and just at the beginning of finding some words on this specific subject.  It’s hard to know what to say.  However, I know I couldn’t have done it without so many wonderful family, friends and strangers with supportive words and actions that came from their heart.  The heart is always wiser than a cliché.

 

Posts of 2012 Every Preemie Parent Should Read

It seemed 2012 was a year of solidarity within the Preemie social media community.  Life after NICU and Papas of Preemies launched late in 2011 and early in 2012, several private Facebook groups started, there was the first Parents of Preemie Day in the spring and the first annual World Prematurity Day was in November 2011 and grew exponentially in 2012.

Having the support of a community has been a key element to getting through life with a preemie – especially during cold and flu season lock down.  Here is a collection of some of the 2012 posts from around the community that I’d recommend to any preemie parent or friend/family of a preemie family.

Posts to read when you are a new preemie parent:

Dear New NICU Mom by Lindsay Franks for Life with Jack

Dear New Preemie Parent by Tatum Marinkovich for Ain’t No Roller Coaster

A Letter to Me by Joel Brens for Papas of Preemies

Posts to read when you need to hear someone say the right thing:

How to Talk to a SN Parent by Marty Barnes for Papas of Preemies

What to Say (when a parent loses a child) by Jana Kimmel for Keeping up with the Kimmels

Post to read when you need a reality check:

Catch up by 2? by Jessi Bennion for Life with Jack

Post to read when words hurt:

The R Word by Amanda Knickerbocker for Understanding Prematurity

Post to read when there is an older sibling:

The Therapy Fund Vol. 6 by Melissa Harris for The Tales of the Anti-Preemie

“I am Preemie Parent, hear me roar” post:

“Get over it,” “Just Fine,” “Normal” by Tatum Marinkovich for Ain’t No Roller Coaster

Post to read over and over and over again:

1st Corinthians for Moms written by Katie Loveland for Life with Jack

What preemie posts helped you most in 2012?

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editors note:  I had mistakenly used the wrong last name for Melissa from Tales of the Anti-Preemie.  The post has been corrected to reflect her correct last name.  My sincerest apologies Melissa!