Archive for the 'Prematurity' Category

Preemies? What preemies?

Published on August 13, 2008 in Aidan, Parenting, Prematurity and Toddlerhood. 2 Comments

We have had a couple of really nice outings with Nathan and Preston and their mom Kim in the last week.  Nathan and Preston were born at the same hospital as Aidan, about a month earlier than him.  They were about 10 weeks early weighing in at 2 lb 12 oz and 2 lb 14 oz.  They are great little boys (thanks to their great parents) and it is always wonderful for Aidan to hang out with them.  Kim and Cecil have just done a wonderful job with these 2 boys.  We all went to the zoo on Friday and all 3 boys loved feeding the giraffes and seeing all of the other animals. 

The giraffes are running!Preston feeding the giraffeNathan feeding the giraffeI'm a regular expert at this nowMommy and me feeding the giraffeHappy boyI dig the carousel

On Tuesday we went to the aquarium.  Aidan was quite excited to see them and was very excited to say hi to Nathan and Preston when they arrived.  All 3 boys are not quite as enthralled with the aquarium as the zoo, but had a really good time nonetheless.

Taking turns being the octopusHmmm...what are theseOoh...octopus tentacles!Now I'm a jellyfish!

Watching these 3 little guys run around is almost surreal.  To think of how early and small they all were and how close they all came to disastrous outcomes makes me feel so grateful.  These 3 little boys are active, curious toddlers and I dare say that most people would not be able to guess how early they all were.  Almost three years ago when we had overlapping NICU time, I am not sure that Kim, Cecil, Brandon or I would have ever guessed we would be dealing with the amazingly relative normalcy that we are.  Instead of discussing apneas, bradys, vents, NG tubes and the like we are talking about when to start preschool, tantrums, and the like. 

It seems like Aidan is looking more and more like a little boy and less like a toddler every day. Brandon got him a Nike baseball cap last weekend and I was stunned at how old he looks with it on. Here is a shot with him in it and one with his favorite “grandma” Catherine. Oh…and a really cute one where he is trimming Brandon’s toenails. Too funny. :-)

This hat makes me look like a big boyCatherine loves meTime to clip your toenails Dad
In other news, the hubby and I are getting ready to take our first weekend trip together away from Aidan. My very gracious brother and his wife are watching him for 3 days next weekend. Aidan will be great. He loves his cousins and will probably have the time of his life. Me? I haven’t been this anxious to go on a trip in a long, long time. I can’t wait to get some time alone with Brandon. We are going to Santa Barbara for a friend’s wedding and making a weekend out of it. I can’t even imagine how great it will feel to have some extended one on one time with my better half.

Mommy and Daddy going out

Life is good.  Very, very good.

One of the best rants ever

Published on July 19, 2008 in Funny, Pregnancy, Prematurity and Rants. 2 Comments

Julie, over at A Little Pregnant, wrote one of the best rants I have ever read.  For anybody who has ever suffered from infertility, miscarriages, prematurity, or complicated births only to have above harrowing experiences minimalized by a clueless granola cruncher…this post is a MUST read. 

The double edged sword

Published on July 1, 2008 in Aidan, Parenting, Prematurity and Toddlerhood. 2 Comments

We spent a lot of Aidan’s first year and a half in relative isolation.  He was, after all, a 28 weeker that had been vented for 7 weeks and was coming home on oxygen in December.  Any parent of a preemie that had lung issues will relate to how scared you are of RSV and other nasty germs when you are finally bringing your precious little bundle home. 

So we had really strict rules about Aidan’s exposure.  He was on oxygen from when he came home to mid May.  He was receiving monthly shots of Synagis to help him weather the effects of RSV a little better if he contracted it.  This vaccine was not a preventative vaccine, but rather one that hopefully minimizes the ill effects of RSV.  The only places I think I took Aidan for his first few months of life were his pediatrician for check-ups and Synagis shots, his pulmonologist a couple of times, and physical therapy. 

Some people reading this may be really wondering about how germ crazy we were.  I know it sounds nuts to those that have not been there.  But in all seriousness, we were told in no uncertain terms that babies like Aidan can be put back on a ventilator or possibly die from RSV.  Exposure to other children in these times was out of the question.  Kids simply carry way too many germs, and the ones they do carry are usually more virulent than ones adults carry.

We didn’t go to anybody else’s house and anybody that came to ours had to be germ free for at least 7-10 days and nobody in their house could currently be ill.  Then, upon arrival, they were greeted and taken to the sink to wash their hands.  Hand sanitizer was in abundance and our guests (for the most part) seemed understanding about our restrictions.

In the summer, we could be more relaxed.  Kind of.  Aidan got his first bad cold in June of that year and had been off oxygen for about a month.  Here we were, in summer, and it was bad.  A couple of ER trips, some breathing treatments, and eventually a few day hospital stay with some oral steroids and oxygen.  At this point his pediatrician put Aidan on Flovent to “keep his lungs in check” and help him be better able to weather a cold without steroids and oxygen.  It worked.  Aidan got a couple of colds that summer and needed some breathing treatments, but no oral steroids, no hospital visits, and no oxygen.

Then in October of 2006 we went on lockdown again.  Aidan’s birthweight, gestation at birth, and lungs meant one more winter of Synagis and one more winter of being a little isolationist.  Aidan did get several colds that winter, but managed them all pretty well.

By May of 2007, I was really tired of being isolated and Aidan’s pulmonologist had discharged us!  I could hardly believe it.  She said Aidan’s lungs look “great” and she had no reason to see us.  She said his growth had helped him tremendously.  We had been expecting to see her for at least a couple more years.  Finally we got the OK to join a playgroup.  Aidan got lots of colds from this, but I figured it was par for the course since he had not had much germ exposure.  We have continued in the gym style playgroup to this day.  This winter I added an inflatable play place to the repertoire, so that we are doing social things with kids his age at least twice a week.

 The double edged sword is this.  The very behavior that kept Aidan and his lungs protected is what is doing us in now.  He is getting a lot of germ exposure that other kids his age already have degrees of immunity to.  So he is in this mode where he will be sick for a few days, well for a few days or a week or two, and then get something again.

 This time it’s a doozy of a stomach bug.  He is going on 5 days of runny you-know-what.  Actually runny is being complimentary.  I’d say “gushing” is more apt.  The poor little bug has a constant fever cycling between about 101 at good points in the day to 103-104 at the bad ones.  He is handling it like a champ though.  If I had spent the last few days sweating through my pajamas and having….err…no control, I would be in a foul mood.  But he just seems interested in being loved and getting cuddles. 

He is taking his first nap in 5 days where he is not attached to me.  I feel like I have temporarily shed my tumor.  :-)

The positive things I take from all of this?

1.  Aidan is really strong now.  Sure he gets some illnesses, but he bounces back like a champ.  It is wonderful to see his immune system doing its job!

2.  I get a break from chasing him!  ;-)

3.  This doesn’t rattle me anymore.  That is seriously a great feeling.  It doesn’t rattle me to see him get sick.  Sure, I don’t like it.  But I don’t feel that crazy, gnawing fear in the pit of my stomach anymore. 

In fact, dare I say, I have become downright relaxed.  About 3 weeks ago, we all went to a local pizza place.  THE best pizza EVER!  There was a play table with a lego train set on it and a Fisher Price garage.  Do you know that Aidan was playing with that thing for over 10 minutes before my husband complimented me on how relaxed I was about the (probably never cleaned off) toys.  And you know what?  I hadn’t thought about it!  Maybe that makes me crazy.  Or maybe I am finally getting some sanity and peace. 

The food police

Published on June 2, 2008 in Aidan and Prematurity. 3 Comments

I have a bunch of thoughts swimming in my head about preemies with feeding issues and really just want to get some of them off my chest.  If this seems a little disjointed…you were warned.  :-)  Compared with a lot of our other preemie pals, Aidan’s feeding issues really look mild.  But this is really the one area that Aidan is still a bit “behind” in for his actual age.  I had really come to a place of peace about the feeding stuff until I recently had several different people make inquiries about something having to do with Aidan and food and it got me thinking and riled me up a bit.

So…some background.  Aidan is a former 28 weeker, vented for 7 weeks.  Came home appearing to have no oral aversions and did well bottle feeding.  Right around the time I started trying purees and cereal, he immediately began having gagging issues with the solids.  I presumed it was just new to him and plowed through.  But I became concerned as I began reading more and more on the preemie groups how common feeding issues were.  I asked for a referral to a feeding therapist when Aidan was about 1 year actual/9 months adjusted.  Aidan was vomiting on me anywhere from 4-6 times a day.  The sheer amount of time spent feeding and refeeding was enough to make most people lose their sanity.

My thoughts about his gagging and aversions were confirmed by the therapist.  During the time we were in feeding therapy, Aidan also began developing an aversion to his bottles.  I think the stress of the gagging and aversions were spilling over into something he had always done well.  As he began to make progress with crunchy foods (cheerios, crackers, etc), I decided to switch him to whole milk and sippy cups.  This actually worked!  I think the fact that a new container held his new kind of milk was really a nice mental clean slate for him. 

 The feeding therapist began having me try crunchy combinations such as really crispy grilled cheese sandwich and things of that sort.  About 3-4 months after beginning feeding therapy, Aidan was on the right track and we were discharged.  Things were slow going and he was still getting a lot of his calories from milk and purees.  But Aidan’s growth has always been great, so his pediatrician was ok with what we were doing.

A few months later, Aidan decided that macaroni and cheese could be added to the menu.  This was a HUGE leap, because it added a lot of calories to his diet.  Still I fed purees at least once a day until Aidan was almost 2.  Yikes, huh?  Thank goodness Aidan has always done very well with yogurt and cheese, so calorically we haven’t been very challenged.  But it wasn’t until about age 2 that he stopped doing the occasional gag.  The chance that he could gag not only worried me, but it made it hard to want to try to new things and create a new aversion.

I followed the central piece of advice of our feeding therapist throughout it all.  She advised me that our relationship with food is intricate, delicate, and lifelong.  That I should really try to foster the best relationship possible with it for Aidan.  If this meant that his diet was very narrow for a while, so be it.  So I started giving him great vitamins (Nordic Naturals Berries) that gave him all of the vitamins he might not be getting through food and added a 3-6-9 omega in for good measure.

Aidan is thriving.  He is closing in on 40″ tall and 34 pounds at 33 months actual/30 months adjusted.  He is at about the 50th percentile for weight and 97th or better for height.  We have been doing something right!  Aidan’s relationship with food is a good one.  He has a narrow food menu, but I hadn’t given it a lot of thought in a while.

Recently, my MIL asked me about his diet while she was here.  (Paula, if you’re reading this….I know you meant well…no worries!)  She said she noticed I hadn’t fed Aidan any vegetables.  You know…I immediately felt defensive and went back to this scared space where I wondered if I was doing this feeding issue thing right.  I told her that for a while it was hard to get him to eat *anything* and that I was focusing on that first and foremost.  But this inner being inside me (the one still scarred with PTSD from a premature birth, feeding issues, etc) wanted to ask her if she knew what it was like to watch a child gag on everything you fed him.  What it was like to have him vomit the entire meal you had just fed him on you?  To know that if you couldn’t overcome this somehow that you might need to resort to a g tube or inpatient feeding therapy?  I wanted to be recognized for patiently feeding and refeeding a child who vomited on me for 6 months straight.  I know my MIL really doesn’t understand the feeding issue…nor should she.  I think this is the central problem.

Parents that have kids with feeding issues are off on an island.  Everybody else has great ideas about how you should be doing it, but they’ve never been out there with us on that island trying to feed our kid.  I can’t tell you how many times I had somebody watch me making Aidan consume a certain volume of food and comment, “Kids will eat when they are hungry.”  Really?  Because I know a bunch who won’t.  I know a bunch who would starve first. 

I was even concerned about Aidan’s hunger drive for a while.  I wondered if spending weeks and weeks on continuous feeds via NG in the NICU messed up his hunger drive.  It is really just in the last couple of months that Aidan will tell me he is hungry.  Yay…another victory!

But here comes my big question.  How do you know when to give your kid a little push?  Recently he has tried some things he would never have eaten before.  He is now eating cheeseburger, turkey or ham and cheese sandwiches, egg scrambles with meat and some chopped veggies, and even asked me for a bite of my halibut the other night.  Is it time to start pushing more veggies?  And how does a mom who is a picky eater herself feed veggies she doesn’t like?  Do I start by trying something new once a week? 

He now has all his 2 year molars in and is much more adept and chewing.  He could never eat meats like deli ham or turkey before and now he has one of the two kind of sandwiches for lunch almost every day. 

I really want to abide by the central tenet from our feeding therapist (who is many ways saved my sanity way back when) and make sure Aidan has a good relationship with food.  I fear that I was so scarred by the months of gagging and vomiting that I don’t know how to make neutral choices about this.  It has been weeks since I heard even the slightest gag from Aidan and months since a vomit.  But I am scarred enough that to this day, if Aidan gagged on the other side of the house, I would probably hear it and feel that same sense of panic come rushing back. 

Help me out, readers. 

A tidal wave of normalcy

Published on April 30, 2008 in Aidan, Parenting, Prematurity and Toddlerhood. 3 Comments

Watching Aidan’s development is absolutely fascinating to me.  I had always heard that development happens in spurts but had never really witnessed it firsthand before.  Aidan is currently experiencing several developmental leaps right now. 

He is starting to pick up phonics.  He is only 2 1/2.  My husband and his mother could both read a bit at age 3, so perhaps this shouldn’t be that surprising to me.  We have a couple of wonderful Leapfrog phonics toys.  A Leapfrog Phonics Bus and a Word Whammer.  I LOVE these toys!  He has started to associate sounds with about half of his letters.  It is so cute to hear him say “D says duh” and the like.  Over the last couple of days he has learned to spell “MOM” and “DAD” on the Word Whammer. 

Yesterday at Little Gym and today at Pump It Up, he was noticeably more engaged with the other kids.  It is still normal for kids this age to do mostly parallel play, but I have really noticed him actually engaging other children more just this week.  It is so much fun to watch this.

And a couple of posts ago, I spoke about him climbing.  Wow!  Today at Pump It Up, I turned around inside one of the inflatables, and he was climbing up the “ladder” to the top of the slide completely without me.  He had no fear.  When I saw him doing it by himself, I had to squelch the part of me that wanted to run up behind him and follow him up like I have always done.  He climbed all the way up and came down by himself.  He was so proud and started clapping.   He went up and down all by himself at least 5 more times and we had a blast!

On the way home, he was asking for french fries.  Normally I will stop and get him some fries at McDonalds after our Wednesday outing to Pump It Up.  (I know…bad mama.  He doesn’t eat fast food much at all and has never had a sip of soda!  There…I feel better now.  :-))  I got him a cheeseburger (I thought I’d give it a try) and took the meal home.  He sat up and had almost all the fries and about 1/3 of the cheeseburger!!!  Meats have been a sticking point for Aidan.  He has tended not to know what to do with them so he chews and chews and then there is like a meat paste left in his mouth.  But he really ate this cheeseburger!  He has been doing this with more and more foods lately.  Perhaps because he has all his 2 year molars?

I sat there watching him and felt a tidal wave wash over me.  I didn’t even recognize what I was feeling at first.

I felt normal.

It was really the first time I can actually really remember feeling normal deep into my core in almost 3 years.  Sure I have had moments of normal here and there…but never really a moment where I didn’t find myself thinking something about his preemiehood.  For a while this morning I forgot he was a preemie.  I just saw my son.

I loved this morning.  I love feeling normal.  But most of all, I love my amazing son. 

Why we’ll never be the same

Published on April 8, 2008 in Parenting and Prematurity. 3 Comments

I got the link to this article today through another preemie parent.  It is a short one page article…very worth the read.

For my friends with preemies:  You will instantly find a familiarity in this story.  I think you will read it and say, “She gets it.”

For my friends without preemies:  If you know me well at all, you will know that I am a perfectionist and a worrier.  This preemie journey has done nothing to help these qualities in me.  :-)  But maybe reading it will give you an “aha” moment about watching me over the last couple of years.

http://www.nytimes.com/2008/04/08/health/views/08case.html?ex=1365393600&en=91989fd64174dc3d&ei=5124&partner=permalink&exprod=permalink

I am Aidan, hear me roar

Published on April 5, 2008 in Aidan, Parenting, Prematurity and Toddlerhood. 0 Comments

We had a couple of beautiful spring days in Seattle last week.  Wednesday and Thursday were sunny with temperatures in the high 50’s.  These are the days that we Seattleites wait for earnestly for months.

 I got an email on Wednesday evening from Kim, mom to Nathan and Preston, saying she was going to take the boys to the zoo the next day and wanting to know if we would join them.  Nathan and Preston were across the hall from Aidan while we were in the NICU.  Nathan and Preston are fraternal twins born at 30 weeks weighing in around 2lb 12 oz and 2lb 14 oz.  They are about a month or so older than Aidan and are great kids.

We went to Woodland Park Zoo…just an amazing zoo!  We had not been since Aidan was a little less than a year old.  What an experience!!!  We spent 3 hours there and all the boys had a blast!  It was so amazing to see these 3 former preemies running around together, laughing, chatting…just being boys!

It was great to see the independent streak of all the boys showing itself as we walked from one animal to the next.  We would put them in the strollers but not buckle them up because it wasn’t worth the hassle to unbuckle them 60 seconds later.  Pretty soon the boys all figured out they weren’t buckled in and as soon as they saw the next animal exhibit coming would all bolt out of the strollers and start running toward the glass or bars.

The boys watching the hippos:
Nathan, Preston, and Aidan checking out the hippos

Playing on the monkey and elephant statues:
Let's climb Nathan!Hanging with the monkeyLet's climb this elephantKiss for the monkey

The 3 boys from behind watching the lion put on a roaring display (from left…Aidan,Nathan, Preston). It was quite something. This male lion roared for almost a minute. It was so cute to see all 3 boys so fascinated by the lion and all saying “Lion. ROAR!!!”
Aidan, Nathan, and Preston watching the lion roar

And finally, a picture I think I should really email to the NICU they all were in. I think they would love to see the 3 boys together having so much fun!
The boys on the hippo

Just breathe

Published on April 2, 2008 in Family, Parenting and Prematurity. 2 Comments

I have never felt this invested in a complete stranger before.  Tricia is going into surgery to get her new lungs.  I wrote about Nate and Tricia a couple of months ago here.  Tricia has CF and was about to be put on the transplant list last fall.  Then she found out that the baby she and Nate had been trying for was growing in her womb.  They made the decision to continue the pregnancy.  Tricia made it through a very difficult pregnancy with Gwyneth.  One that was treacherous for both her health and the health of her darling daughter.  Tricia made it to 25 weeks gestation with Gwyneth and bought her the chance at life.  Now Tricia waits for her new lungs.

Their beautiful daughter Gwyneth touched me as all premature babies do.  But this story Nate and Tricia are playing out before a faceless audience of well-wishers has me more captivated than I have ever been in people I have not met, do not know, probably never will meet.

Please take a moment to go to Nathan’s blog and leave a message of support.

If you haven’t been there yet, read their story.  It will amaze you.

I can’t wait to hear the news that Tricia is breathing with a new set of lungs.  I am on pins and needles.

Hope or false hope?

Published on March 11, 2008 in Aidan, Bedrest, Pregnancy, Prematurity and Toddlerhood. 5 Comments

Aidan and I visited his old stomping grounds last week–the NICU where he spent the first 15 weeks of his life.  It was a spur of the moment trip.  Earlier in the day we went to the park to meet Catherine (one of his respiratory therapists turned friend/”grandma”/babysitter) and her dog Bella at the park.  We had a wonderful time.  Aidan LOVES dogs.  He laughs hysterically when Bella licks his face.  He even tries to get up on her back and ride her like a horse.

Taking a walk with Cath and BellaMe with my Aunt Cath and BellaCan I ride Bella like a horseMommy and me on the spinner

After the park we went to dinner with Catherine.  We were taking her back to her house when she suddenly said, “I almost forgot.  I think Janet is working tonight.”  Janet was one of Aidan’s night primary nurses.  Aidan was a very popular boy in the NICU.  He had 2 day primary nurses and 2 night primary nurses.  Sometimes they would have to “fight” each other for Aidan duty.  We had not seen Janet in person in almost a year and a half.  So Catherine called the NICU to  make sure she was working.

We got there at about 6:30 and got to see the day shift right before they left and the night shift as they were coming on.  It was absolutely wonderful.  One of his day primaries, Kathi, was working along with about 5 other day shift nurses who had cared for him.  On the night shift coming in we saw about 5 or 6 night nurses. Janet almost choked on her dinner when Aidan came running up to her.

The nurses seemed to be stuck in place.  Their expressions can be described as nothing short of sheer joy and amazement.  Of course we send pictures almost on a monthly basis via email to the NICU, but all of the nurses told me it is NOTHING like actually seeing the child. 

The antepartum coordinator was there also.  She asked if I wouldn’t mind visiting a few mothers in the hospital on bedrest and talking with them about Aidan.  I am always willing to be of help.  That hospital saved my life and saved my son’s life. 

I met 4 different pregnant women.  #1 was 31 weeks with twins and some evidence of the placenta starting to  separate from the uterine wall.  #2 was 26 weeks with preterm labor.  #3 was 31 weeks with twins with Twin to Twin Transfusion Syndrome.  #4 was 29 weeks with mild preeclampsia.  All of the babies are measuring significantly bigger than Aidan when he was born.  The mother who seemed most affected by our visit was mother #1.  Her twins are a shade over 3 pounds each.  She became very emotional when I recounted Aidan’s birth stats and she realized her twins were double Aidan’s birthweight.  She and her husband seemed very frightened but bolstered by our visit.  They were in awe of Aidan and thanked me profusely for my visit.  I answered a lot of questions for them and I feel as if I gave them hope.

We visited some more with his nurses who also seemed bolstered by seeing this 2 1/2 year old running around.  They could scarcely reconcile the moment with the 1.5 lb preemie they so tenderly cared for.  They thanked me and told me that it is these moments that make their jobs worthwhile…that give them hope.

I reflected on the visit later that evening and felt a mix of emotions.  There seems to be a big gaping hole in most NICUs and antepartum units in terms of taking care of emotional needs of the family.  What would it have meant to me when I was on bedrest to have met a family who had a “good” outcome?  Does that sort of meeting give hope or false hope?  What had I given these antepartum parents or even the nurses for that matter?  Hope or false hope? 

A picture frame hangs on the central hallway wall in this NICU.  There are now 2 others next to it.  The picture was the first graduate picture hung on the hallway of his NICU.  On Aidan’s first birthday we framed two pictures…one of Aidan on the day of his birth with Brandon’s hand behind him.  Another was a montage of first birthday pictures with the inscription “Forever Grateful for Aidan Christopher”.  I have had other parents remark to me that this picture gave them hope as they walked by it every day.

I worry sometimes that our story gives false hope.  I know that the odds of a 1.5lb baby turning into a walking, talking, running, jumping, laughing toddler are not amazing odds.  There are children who have difficulties and even disabilities.  Life with Aidan has not been completely smooth sailing.  We had some feeding issues and lungs to watch out for.  But life felt sublime after that evening visit.  We had come so far.  Were we really in that place only 2.5 years ago?  But when I visited those women, I remembered that fear.  The ultimate fears.  What if my baby doesn’t make it?  What if my baby is permanently impacted?

Would I have wanted mostly blunt honesty about outcomes?  Would I have wanted to see a child like Aidan?

I think I’d want both.  I would want to know what *could be*…in both manners of speaking.  Possible difficult outcomes…but also the ability to hope.  The hope of what could be.  The hope of a joyous toddler.  The hope of Aidan.

I really pray I didn’t give false hope.  As I thought about it more the next day, I came to the conclusion that there is nothing false about the hope I gave.  Aidan is real.  His outcome is real.  Parents in this scary situation desperately need something to grab onto.  I talked about the difficulties we faced, but I also talked about how most of my days now are filled with chasing after a very curious and active toddler. 

The experience of that evening makes me want to do more for families faced with antepartum and NICU stays and impacts of prematurity.  I’m just not sure what that looks like yet.

Blame the mom

Published on February 26, 2008 in HELLP, PIH/Preeclampsia, Prematurity and Rants. 14 Comments

I stumbled across a claim on another blog recently that got my blood boiling.  Not much sends me into hyperactive research mode now that I am a stay at home mom.  But I haven’t forgotten how to do it. 

There is a diet that claims to prevent 100% of preeclampsia and HELLP.  My sniffer went into overdrive.  100%?  There is almost nothing in medicine that can accurately have the word 100% attached to it.  I did some reading about this diet and started becoming enraged.  I found many sites that spout the claim found on the diet’s website.  Their claim follows in blue…word for word from the homepage of the site.

“Toxemia. Pre-Eclampsia. HELLP Syndrome. Premature birth.
Low birth weight. Intrauterine growth retardation.

It’s not genetics. It’s not random. The cause is NOT unknown. Toxemia CAN be stopped. PreeclampsiaA-toxic-condition-developing-in-late-pre... CAN be stopped. Best of all, YOU can stop it!

HOW? All the scientific research being done on toxemia and preeclampsia these days is focusing on treatment, and none of it is promising. But the research has already been done, many times and many ways in the past 50+ years, and we know that you can PREVENT this from happening to you in the first place, no matter what your personal history may be. The simple answer? GOOD NUTRITION.”

 

Oh, gosh!  Why the hell didn’t I think of that?  Good nutrition?  Guess it is my fault my son was a preemie! 

Except….except that it’s not my fault.  You see I followed this diet.  I clicked on their sample diet and I can tell you….that is what I was eating.  Yet, I still developed Class I HELLP. 

Now, don’t get me wrong.  I believe nutrition and protein intake play a huge role in pregnancy.  It is this idea that pre-e and HELLP would go away if we all followed the diet.  But it won’t.  You see, preeclampsia is a syndrome.  (ie. a disease that may be triggered by several independent factors that leads to a common situation (compromised placenta)   In my particular case, I was in ridiculously good shape going into pregnancy.  My resting heart rate was in the low 60’s, my baseline BP was 105/60, I worked out and taught classes at the gym 6 days a week, and (as I recently discovered) I ate this site’s recommended diet. 

When the underlying reason for your pre-e and HELLP syndrome IS actually genetic, diet manipulation can only go so far.  In my case my homozygous MTHFR c677 was my problem.  Following the diet to the letter would not have saved me from pre-e or HELLP.  Knowing prior to conception that I had this thrombophilia might have….heparin could have been given from early on.

I think there is even a bigger picture here.  It is the “Pregnancy is not a disease” movement.  For most women….it isn’t a disease.  It is a natural part of life.  But there are those of us that fly in the face of that fanciful notion.  Those of us (and our babies) who need medical intervention, sometimes drugs, and science to intervene throw a huge monkey wrench into that movement.  So what is the solution to explain us outlyers?  That the bad things that happen to us ~5% of pregnant women must be OUR fault.  That is essentially what this diet is purporting. 

This is not only grossly inaccurate but emotionally damaging to women who have done everything right and still ended up with pre-e, HELLP, and/or a premature baby.

I love it when I see that new research is uncovering more of the mystery behind pre-e and/or HELLP.  All that I ask is that before some well-meaning soul tells me about it, writes about it, etc, that you actually check to see what kind of research is being touted.   Is it peer-reviewed? Randomized?  Double blind?  Placebo controlled?  Prospective or retrospective?  The answers to these questions matter.  You see this is the benchmark to which I was held every day of my professional life.  I worked for a pharmaceutical company and whenever I presented a study to a physician these were the criteria they asked about.  When a “study” didn’t meet all of these criteria, it was treated with great skepticism.  I have searched extensively for studies done on this “diet” that meet the above criteria.  Surprise!  ;-)  There are none.

This theory makes me angry.  It makes me sad.  I wonder how many former pre-e or HELLP sufferers have read information about this “miracle diet” and felt their heart sink and then blamed themselves.  It is this kind of misinformation that further damages already traumatized women.

There is a wonderful thread I found on the Preeclampia Forum website that has numerous links to peer-reviewed studies that will dispel the notion that “Mommy could have prevented it.”

http://www.preeclampsia.org/forum/topic.asp?TOPIC_ID=9742&whichpage=1&SearchTerms=%2Cbrewer%27s%2Cdiet

 I also wanted to send a shout-out to my MTHFR/HELLP/preemie mom pal Kathy, who I just discovered as I was editing this post, wrote about this very issue.  She makes some excellent points as well.

I think moms spend enough time playing the guilt game in their own heads without adding unsubstantiated fuel to the fire.