March 28, 2013

Week 23- Pregnant with Placenta Accreta/Percreta, Placenta Previa, Thalassemia

See that Percreta picture?  That placenta (the light pink part) is growing through the front of the uterus, heading towards the bladder...
My Percreta goes through the front, the cervix AND the back.  I am EXTRA lucky.
Seriously, someone buy me a lottery ticket-- this is my month.
ps- this "normal" is not really a normal placenta... it is a women with complete placenta previa (a placenta that covers the cervix.)  Normal placentas are usually higher in the uterus.  I imagine that is why most c-sections are lower.
{background info- Hello! My name is Jenifer and this is the story of my high-risk pregnancy.  I am currently pregnant with my eighth child (A BOY!!) and was diagnosed with Placenta Previa and Placenta Percreta.  I also have Beta Thalassemia which contributes to severe anemia.  While this has been a difficult pregnancy and we anticipate a difficult delivery, IT IS WORTH IT!  

We NEVER regret our decision to get pregnant with this baby and are so grateful for this experience!!

 Accreta affects about 1 in 2500 pregnancies.  (It is pretty rare!)  If you have had previous uterine surgeries, your risk of Accreta increases to 1 in 500.  I have had two previous c-sections and one D&C, following a miscarriage.  Although I was at risk, prior to being diagnosed with this condition, I never knew Placenta Accreta existed.  Accreta is becoming more and more common as abortions and c-sections becoming more common.    

Would I have decided not to have another baby if I knew I had a greater risk of Accreta??  NO.  Even with a higher risk, it is still VERY rare.  To me, the gift of bringing a baby into the world outweighs the risk of something being wrong.  For years I knew I had another little boy waiting to come to my family.  This pregnancy is a gift, I believe LIFE is worth the risk.  

I would however, have opted NOT to have a D&C for my miscarriage if I knew it would threaten my ability to have safe pregnancies in the future.  I would also NEVER choose a c-section for convenience-- my c-sections were both emergency.  I am also glad that I found a doctor willing to deliver my last baby VBA2C (it is rare to find a doctor who will attempt a vaginal delivery after 2 prior c-sections).  Vaginal deliveries are better and safer.  Surgery in your uterus DOES affect your ability to have healthy babies in the future.  Mothers need to be made aware of this BEFORE we choose optional surgeries.
yes, this is a pregnant uterus with four placentas and no baby.
not realistic, but it does show the different levels of accreta.  
What is Accreta?  Accreta is where your placenta attaches to your uterine wall instead of to the lining of your uterus.  There are three different levels-- Accreta, Increta, and Percreta.  Accreta is where your placenta is attached to the first layer of uterine wall, deeper than the lining-- often Accreta's can still deliver and save the uterus.  Increta (17% of all Accreta cases) is where the placenta has grown into the muscle wall of the uterus-- this usually requires a c-section/hysterectomy.  The rarest form of Accreta is Percreta where the placenta actually grows through the wall of the uterus and attaches to other organs in the abdomen   Percreta is very dangerous and will require a c-section and repair of other internal organs that are affected.  Percreta affects only 5% of all who have Accreta.  (What is 5% of 1 in 2,500 births? Very rare.)  Most commonly, Percreta involves the bladder which is in front of the uterus (anterior placenta).  Sometimes Percreta involves the bowels with a posterior placenta.  Rarely it involves the uterus, bladder, cervix and bowels...  this is my condition.
can you see how complete placenta previa WITH placenta percreta can lead to a pretty crazy ultrasound?
Often, Placenta Previa and Accreta or Percreta go together.  Placenta Previa means your placenta is at the bottom of your uterus over your cervix.  (Most healthy placentas attach high up in the uterus.)  When the placenta is low, it is more likely to be positioned over old c-section scars (which are usually in the bottom front of your uterus.)  It is easier for the placenta to attach and seep through old scar tissue than it is for placenta to attach to healthy uterine wall-- this makes sense to me.  It is important to note, however, that you can have Percreta or even Accreta on your first pregnancy, or without any previous uterine surgeries.  This condition is just one of those things that could happen in life.

Accreta is most dangerous when undetected prior to birth.  After the baby is delivered, the doctor will try to deliver the placenta.  When the placenta is attached to the uterine lining, it will come out easily.  When the placenta is attached to the wall of the uterus, it will be difficult to remove after birth.  Undetected Accreta will usually result in a placenta that tears during delivery- some comes out and some remains inside the uterus hemorrhaging.  While they are cleaning up the recently delivered baby, the mother will start to feel sick, often begin throwing up and then will begin to hemorrhage   Wise doctors will recognize the hemorrhage and rush the mother into an emergency hysterectomy where the uterus will be removed to stop the bleeding.  If the mother has an undetected Percreta, as they remove the uterus, the bladder will tear and they will need to reconstruct the bladder also.  Diagnosing this condition prior to birth is so important.

Accreta can be diagnosed by careful ultrasound technicians pretty early in pregnancy. 
Here are some warning signs that helped them diagnose me--
1- I bled early in my pregnancy (the first 12 weeks).  I believe that I miscarried a twin and in the process shed much of my natural uterine lining making it easier for the remaining placenta to attach directly to the uterine wall.  Accreta is not supposed to cause bleeding early in your pregnancy-- but, i do know others who have had a similar experience.
2- Early ultrasound showed a low-lying placenta.  Placenta Previa paired with previous c-sections should immediately raise a red flag that Accreta might be present.
3- My placenta had Lacunae or black lakes in it.  In the ultrasound, my placenta looked like Swiss cheese.  It has gotten more swiss cheesey as it has grown, but the black lakes were certainly present early on and were good early warning signs.
4-  I just knew something was wrong.  Although my OB continually assured me that things were "fine"  I just didn't feel like this was a normal pregnancy.  I pushed to see a specialist and the minute the fetal medicine doctor saw my ultrasound he diagnosed me.  Trust that gut feeling you have and seek the proper diagnosis.
5- Scoping my bladder showed placenta vessels invading.

My placenta is on the anterior and posterior wall of my uterus adhered to the myometrium, directly over my previous c-section scars, and has spread (like a cancer) to other organs in my abdomen, mainly my bladder, my cervix, and my colon.  Doctors also note that my Percreta covers almost my whole placenta, not a small portion.  This is extremely rare.  They are hoping to begin steroid shots at 32 weeks (to help my baby's lungs develop) and deliver with a large team of specialists (and a lot of waiting blood) no later than 34 weeks (that will be around June 1st).  If I begin bleeding prior to 32 weeks, they will life flight me to OHSU and keep me hospitalized until I deliver.

My delivery will be a scheduled surgery in the main OR.  They expect over 20 doctors and it could take up to 8 or 9 hours.  The last two Percreta patients at OHSU required 40 units of blood transfused and had a very intense surgery.  A healthy adult only has about 10-12 units of blood in their body.  Yeah, that is a lot of blood loss!

I am currently being treated by a team of specialists at OHSU.  The head doctor I work with is in Perinatology and Fetal Medicine, my surgeon is in Gynecology/Oncology, I have a Hematologist that specializes in Obstetrics and a Urologist.  Additionally they are coordinating with the blood bank to ensure there is enough blood ready for my extensive surgery and I've met with Anesthesiologists.  In time, I will meet the NICU team.  Yes, I have MANY doctor appointments.  We feel SO blessed to have this baby and to be in the hands of skilled doctors.  

I have been on complete pelvic rest and modified bed rest since 12 weeks of pregnancy.  My husband and other kind family members are taking care of my home and family while I spend most of my days sitting or laying.  This time of resting has been difficult, but it has also been a great gift.  I am thankful for every week that this baby is growing bigger and healthy inside of my womb.  I can't wait to meet this little guy-- our grand finale!!

This is a record of my pregnancy for my family and for those of you who may be experiencing something similar.  Yes, I share a lot, perhaps too much.  Thank you for being a part of this journey with me.  I am one who learns much from the experiences of others and I'm happy to share my experience with you, in the hopes that somehow it may help.}

Week 23--  

Doctor Appointments.

They continue to do a lot of blood work to see if I'm having a hemalytic reaction to my blood transfusions.
I feel good and my blood looks good, so no transfusions.
She explained a lot of blood stuff that went over my head.  Basically, I needed the assurance that they would be prepared with blood when the time comes for my surgery.
This doctor wants me to call her directly if I am concerned or begin to feel bad.  I had been trying to leave messages with her nurses or nurse practitioners when I felt I was having a reaction and she said in the future contact her directly.  Thank goodness!
Blood is looking good this month!
She ordered more lab work and sent me over to do labs following our appointment.

Prior to my appointment I had another intense ultrasound which lasted over an hour- both external and vaginally.
The baby looks good, but my placenta is not good.
The whole bottom of my uterus looks like Swiss cheese placenta... there is no discernible defining line where the uterus usually is.

I can not accurately describe what it is like to see my ultrasound.  It is almost UNBELIEVABLE.

Your uterus is like a balloon, on the right (or front of your body) is your bladder.  The tie at the bottom is your cervix that opens during delivery to let out the baby and placenta, and to the left (or back) is your bowels and intestines.  Other organs are squished all around your continually expanding balloon uterus.
On an ultrasound you can usually see the border of your uterus.  It looks like a white line, in the shape of a big circle.  The placenta is usually inside the border of the uterus.  The bladder also looks like a smaller circular spot next to your uterus, and your cervix looks like a thick, fat carrot at the bottom.

On my ultrasound the whole bottom of my uterus looks like a blanket of swiss cheese placenta.  You can't really see ANY uterus border... it's just placenta with a lot of small lakes of blood.  Amidst this placenta there is a bigger lake-like thing, that is my bladder.  There is a darker, hard to make out carrot shape, that is my cervix, and there is a mess of placenta and bowel.  It's bad looking.

My room was full of doctors and residents and a sonographer and an even better sonographer and I'm asking questions like, "Is that my cervix?"  "Is that my bladder?"  And they are all looking at the screen with this look of "Wow.  That's bad."  I say, "So, they'll probably have to remove my cervix too."  And they say, "Yes, definitely."  It is UNREAL.

The sonographer was really trying to see the back of my uterus to determine how my placenta was involved with my bowels and intestine.  She was using a stick ultrasound up INSIDE me.  As she was trying to see deeper back into me she kept asking me to scoot down further.  I finally laughed and told her I could scoot further down, but she would need to do an episiotomy if she was actually going to see any further inside me.  (Sorry if that was too graphic.)  Just another fun day on the ultrasound table.
This picture confused me a little until I realized it is backwards from my brain.
The FRONT of this mom is to the LEFT...
if her placenta was growing through the anterior wall, it would hit the bladder in the center or left corner of the big picture.  In the Placenta Percreta picture can you see how the placenta has just grown out of the uterus and merged with the border of the bladder.  Because the bladder is smooshed right next to the uterus, the placenta just kind of merges them together fusing everything.  Yup, that is what is happening to me.
Placenta's gone crazy!
If her placenta was growing out the right or back posterior side, see how the intestines are there?
Yup.  It is a good thing that most placentas stay right there in the uterus.
The prognosis-- my placenta is attaching to my bladder (like we had seen previously), but it is also merging with my cervix and appears to be growing through the back of my uterus also, where my colon and intestine are located.  AHH!!!  That was new to me and not so good to hear.

My doctor thinks I look great and am doing well.  She said she will not rest easy until my uterus is out of my body.

The "worst case" scenario is that I will need to do some reconstructive surgery of my bladder and my bowels after delivery.  (As if I can even say worst case, because I suppose it could ALWAYS be worse.)  That surgery will involve a bag for urine and a separate bag for stool coming out of my abdomen for 4 months before they can reattach my bowels and bladder.  (I still need to read up on this stuff-- I know a few people who have had this, is it called a colostomy?)  Blah!!  That didn't sound too fun to me.  Hopefully it won't come to that.

This doctor said, "Don't worry, Dr. M (the oncology surgeon) is masterful with bowel reconstruction.  She's a great surgeon."  I am comforted by this, but would rather NOT need a masterful bowel reconstruction.  I told my Perinatolgist that Dr. M seemed to think my surgery wasn't too horrible.  With a laugh (meaning, yes, it is horrible), she explained to me that was NOT because it wasn't a tough surgery, it was only because I am skinny and in good shape.  She said that I should heal well and am easier to operate on than someone heavier.  I am glad I have SOMETHING positive going for me (I bet even that could change after 2 more months of low activity and high hunger... ha!)

Test Results.
CBC- Hemoglobin 8.3, Hematocrit 27
Echocardiogram-- very normal!
Ultrasound- shows Percreta in the anterior and posterior part of my uterus... blah.

Physically at 23 weeks.
I still really feel good.  I'm grateful that my mom is here caring for my home and family so that I can rest.
I try to get out often and visit with friends.
I do not lay down all the time (it makes me feel horrible!)
I sit and walk a bit, take car trips, go to church, watch movies and plays, and do things with my family.
I am not lifting heavy things, running or climbing stairs, driving, or walking for long periods of time.
(I am SO grateful I am NOT bleeding!!)
I do nap or rest frequently.  I am rarely alone at home or in the car (in case I begin to hemorrhage.)
I am in a lot of lower abdomen pain if I do too much, so i feel good about my limited activity level.

Mentally at 23 weeks.
We have had friends come visit and book group at my house.  My kids often invite friends over and I try to continue watching my kids play basketball or sing in their middle school play.  Todd and I sneak out to dinner and a movie when we can.  The more social I remain the happier my soul seems to be.  I am so grateful for all that I can still do so I don't spend much time focused on what I'm not doing.

I am very real and open with people (have you figured that out yet from this blog?) and because of this, I am surrounded by love and friendship.
Thank you for helping me through this little journey of mine.  I know I would be mental without you!!  Well, more mental.

I wrote a big LONG post about how I deal with each item on my "not so good" list.  (I'll publish that tomorrow in case you want to read for a few hours...)
Basically, my mentality is--  Life is good, even when it's hard.
Things could always be worse.
Most hard things come hand in hand with great blessings-- treasures of learning and growth that you would never have without experience.
And perspective--  People are going through hard things every day.
If they can do it, I can too.
A little "CRAP" in my life is nothing I can't handle.

Sometimes I get down and whine and tantrum... and those are good days too.  They make me appreciate the times when I feel faithful.

Today, I feel faithful.
Life is good, with or without proper plumbing.
Please, take a second the next time you are sitting on the toilet and just BE GRATEFUL for all you CAN do  (or doo doo).


Kaela Frame said...

You are surely one of the bravest and strongest women I know!! I am certain there are angels with you and your family, protecting you through this uncertain time!! Maybe that sweet baby twin that you are no longer carrying is with you...watching over his twin brother!! Love you Jen!!! Sending you hugs and kisses!!

Lindsey said...

You are so loved and supported, Jen! Every one of you, right down to this still-tiny miracle boy. We are praying for you all.

Lanette said...

Doo doo?! You're gross. Funny, but gross. I love you.

Kristine de Vera said...

Hi! I'm Kristine, 22 weeks along & new to your blog. At 19 weeks we confirmed we are having our 3rd son. Unfortunately, it was also confirmed I have CPP, accreta (c-section scar tissue), increta (cervix) & percreta (possibly bladder invasion). I'm so sorry you & your family are going through this. I joined the yahoo accreta survivors forum & found a lot of support through them. Although we don't know each other, please know I am praying for you & your family. I know some of what you're going through & praying for safe & successful outcomes for us both.

jenifer said...

Thanks Kristine! Good luck to you too!!!

Anonymous said...

Hi, I just came across your blog. Have you given birth yet. How are you? I survived percreta my daughter is now three.

Anonymous said...

Hi, I'm a survivor of Percreta, my daughter is now three. Have you delivered and how are you?

Anonymous said...

Hi, I just came across your blog. Have you given birth yet. How are you? I survived percreta my daughter is now three.

kim Park said...

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