Congratulations, It’s a Girl, but wait…. (Learning about Amnion-Chorion Separation)

I have been absent from the world of blogging for a few months.  Some of it is just simply from a lack of time due to the holidays and work becoming busier than ever.  The last few weeks have been purposeful though as I have been (and continue to at this time) sorting through the emotions that have ensued since our 19 week ultrasound.

That is right, we had an ultrasound that showed number two is officially a little girl!  Liam is going to have a little sister to torture 🙂

The day of the ultrasound my husband, Liam, and I met my parents at the doctor’s office.  My parents stayed long enough to hear that they were going to have a granddaughter, and then headed back out to the waiting room play area while the little girl continued her second photo shoot (we had a dating ultrasound at 9 weeks).  She was being quite active at that point in time and I figured that was causing things to take longer than they had with Liam.  Now I suspect something different.  As the sonographer finished up she made one quick comment about the membranes not being fused and then handed us our pictures and showed us to our room for the checkup I had scheduled after the ultrasound.  There we waited…. and waited….. and kept ourselves busy looking over the pictures and discussing what we thought life would be like with a little girl…. and waited some more.  I suggested that maybe an emergency had occurred and that is why they were running late.  I never suspected that the reason they were running late was the quick comment at the end of the ultrasound, though it had apparently crossed my husbands mind as he asked what it meant, to which I replied that I had no clue, membranes not fusing was not something I could recall being discussed in nursing school.

Thirty minutes later our nurse midwife walked into the room apologizing for being late.  The reason, she explained was because she had to make a phone call to the high risk pregnancy specialist in the area regarding the ultrasound.  Inside the uterus there are two membranes, the amnion and chorion, that typically fuse by week 17, mine have not at week 19.  It is extremely rare for this to happen. So rare that no one (including the high risk specialist) have ever seen it. Unfortunately with rarity and lack of study comes a lack of answers. My nurse practitioner was unable to provide me with much to go on other than to:

1. Not stress out about it too much.
2. Take it as easy as I could
3. Prepare for a follow-up ultrasound at 27 or 28 weeks and then frequent trips to the high risk specialist after that.

Being the person that I am I (of course) could not tolerate the lack of answers as to what exactly the prognosis was for my daughter and myself, and so I have spent the last few weeks scouring medical journals searching for answers. I consider myself to be fairly adept at research having spent over a decade fine tuning my research skills while obtaining various college degrees. For the first time ever my searches were leading to mostly dead ends. After several weeks I found a grand total of one research study that focused on this condition in a medical journal. One single study to supply me with a prognosis and potential recommendations.

The prognosis itself isn’t great, though it could certainly be worse  If our little girl can make it through the next few weeks thing will look a little brighter, but it seems the major danger with the membranes not fusing is that they can get tangled around the umbilical cord cutting off the babies oxygen supply.  The lifting restriction and directions to stop and rest every couple of hours when at work are so very important for me to follow, and are constantly on my mind.  Drinking enough water to keep my fluid levels up is also extremely important.  I breathe a sigh of relief every time she kicks.  After 28 weeks the trips to the high risk specialist will be to make sure she is still living in an environment where she can thrive and grow.  There is a risk of IUGR (intrauterine growth restriction) which can result in developmental delays, and she will almost certainly be a smaller baby.  It seems that every person that has been through this (the handful I could find across the country) has been put on bed rest or modified bed rest by 35 weeks…. so I am mentally preparing myself for that as well.

My husband and I are focused on staying positive.  At the same time we are preparing a room and sorting clothes for a baby who might not make it home.  I am keeping myself as busy as I can to continue to help distract myself from the reality of the situation while trying to enjoy every single moment I have with our little girl.  She is already a feisty little one who kicks much harder than her brother did at 23 weeks, especially when her puppy brothers start barking!  We have decided to name her Catriona Dawn…. Liam can’t quite get that out, but calls her “Ona” for short and frequently gives her “kisses” through Momma’s belly.  Catriona is already loved immensely and we truly hope that with precautions and my general state of healthfulness (otherwise) we will beat the 50/50 odds and enjoy a happy healthy little girl.

Without further ado…. the star of the show 🙂

 

19 weeks, posing at her second official photoshoot

19 weeks, posing at her second official photo shoot

 

And a picture of the bump at 20 weeks 🙂

IMG_0325

20 weeks, halfway there!

Are you interested in learning more about Amnion-Chorion separation?  The most helpful website that I was able to find with recommendations was from a San Diego practitioner and can be found here.

Do you enjoy reading research papers as much as I do?  You too can enjoy the only research I was able to find on the subject here.  You will note that I did not mention the increased chance for Trisomy 21 during my discussion.  I do not feel that the risk is all that much higher than it would have been without the amnion chorion separation as our scan was normal and the other testing we have had done has not (yet) come back abnormal.  Keep in mind that I am not an expert in this field, the area of medicine that I practice in is geriatrics.

It seems that diagnosis of Amnion-Chorion separation is increasing thanks to improvements in ultrasound technology, hopefully the odds for successful outcomes will increase with the increase in diagnosis.  My hope for the future for women who receive this diagnosis is that the recommendations for Mom during the pregnancy can be fine tuned and more concrete 🙂

 

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26 comments

  1. We are friends of your brother, Fr. Jerabek, and will definitely keep you and your baby in our prayers. We had a scary 20-week ultrasound with our fifth child and learned our son had heart disease. I had in-utero fetal surgery to do a minor repair to his heart when I was 23 weeks pregnant. He came into this world at 30 weeks and was hospitalized for five weeks following his birth. He had several minor heart surgeries and open heart surgery at age 3. He is now a very active, smart first grader. We are confident that the many prayers that were prayed for him (and continue to be prayed for him) enabled him to be healthy. Keep praying and encourage all of those around you (far and near) to pray for your daughter…and most of all, be confident in God’s power as the Divine Physician. God bless you and your family.

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  2. We are related to friends of your brother. We will pray for you and your sweet girl! I love that your son has given his baby sister a precious little nickname. My oldest son did that too for his little sister. He was too little to correctly pronounce Natalie so he just called her Tallie (tall-ee) and that is still her family name 15 years later!

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    1. Thank you for your prayers. What a sweet little nickname your oldest gave his sister. We were planning on calling our little girl Cat for short, but Ona has grown on us 🙂

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  3. You and your little girl are in my prayers. I was just telling my (10 month old) daughter today how much I loved to feel her fluttering kicks during pregnancy, and I know each kick brings you a feeling of reassurance. Prayers for a healthy pregnancy and delivery.

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  4. Congratulations!! A baby girl! Baby girls are the best. We have had our share of high risk specialists during pregnancy too. Having to see one for this pregnancy as well due to our children’s history of heart defects. Worrying about your baby is the worst. You will definitely be in our prayers! I am already doing a rosary novena for my youngest who has a heart condition and possible Noonan’s Syndrome, so I will add you to my petition. Try not to worry, mama. (Impossible advice, I know). She is a beautiful wonderful baby and Jesus will take care of you both. Keep us posted! She is so loved already by all of us devoted readers!

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    1. Thank you! The outpouring of support has been amazing from everyone, and we certainly appreciate the prayers. I will be keeping your youngest in my thoughts as well as you continue to battle a heart condition and the possible Noonan’s syndrome. We are taking it day by day thing right now, but today her kick counts are right on the mark so far 🙂

      Liked by 1 person

  5. I’m 20 weeks myself and just got diagnosed with partial amnion/chorion, it’s been very stressful for me as well, researching and not finding much. I really only found one study as well. I hope we all have good news to report back. Please update? You’re the only person I’ve been able to find going through this as well.

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    1. Hi Jocelyn,
      I completely understand your frustration and stress. I am 28 weeks now and finally had an ultrasound last week that showed a complete fusion…. I can’t even begin to tell you what a relief that has been. I hope you can try and take it easy and not stress too much about it (though I know that is easier said than done). My doctors put me on a strict lifting restriction and did some extra testing at my 24 week appointment where they found a vaginal bacterial infection (easily treated with antibiotics) that could have been the cause for my non fusion. I wish you luck on your journey. Keep me updated when you can, you will be in my thoughts.
      Sarah

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      1. I found this blog in my own research effort. Thank you so much for sharing your story. I am 13 weeks with a partial separation and desperate for Information and recommendations. Everything I read says bed rest or partial bed rest but my doc and OB just think I need to carry on as normal but not work out. I feel That is way too risky. Have either of you tried progesterone or acupuncture?

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      2. Hi Jessica,
        I wish you luck with your research efforts. Despite scouring the University library system and internet I was not able to find much myself, but hope my synopsis/interpertation was helpful for you. The good thing about them catching your separation so early is that you have several weeks left before a complete fusion would be expected. Typically the amnion and chorion do not completely fuse until between weeks 15 and 17.
        I was able to carry on as normal with a lifting restriction (no more than 20 pounds) and a restriction to how long I could stay on my feet (no more than 2 hours at a time) with my separation. A late fusion did occur for me at 27 weeks. I too looked into the possibility of progesterone therapy, but it did not seem like a good fit for this particular condition and was specifically not recommended by a progesterone therapy specialist. I did not look into acupuncture, though I suspect that it would help (at the very least with the stress that goes along with the unknown). I wish you luck and hope that you have a fusion when it is time for your anatomy scan in a month or so! You will be in my thoughts.
        Sarah

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  6. Hey there mamma,
    Thanks for your article about amnion-chorion info. I’m 22 weeks pregnant with di/di twins and at 19 weeks found out that one of them had the amnion chorion separation. Thankfully, there are no markers of any kind of genetic deformity but I’m still worried. I’ve tried my best to not research things to death because I just end up worrying and stressing but thanks to your article I at least now know how to pray. I was wondering how the rest of your pregnancy was as well as delivery and how your daughter is now. Thank you and blessings!

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    1. Hello and congratulations on your twins!

      The remainder of my pregnancy went very well. Our genetic testing also showed no markers and when we had a follow up ultrasound at 27 weeks it showed that the membranes had fused. I did end up going on a modified bed rest at the beginning of my third trimester, but it was for cardiac issues and migraines that were unrelated to the late fusion. My little girl ended up making it to 39+6 weeks, and was 8lbs 9oz when she was born and 20 inches long. During my research I found that the majority of late fusions still deliver early at 36-38 weeks, so the baby was monitored very closely for the last 2 months with ultrasounds and non stress tests. My placenta did start petering out around 37 weeks, and they tried to induce me twice without success prior to my natural labor and delivery. I suspect you are already at risk for early delivery with the twin pregnancy and will already be monitored closely. I hope this helps and will keep you and your little ones in my thoughts and prayers!

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      1. Thank you so much for replying! It definitely does help and gives me more peace of mind. The only case our MFM had ever seen was with twins and the babies were both born just fine. It’s good to hear if another success story, for sure!! I feel like this kind of stuff has probably been happening for centuries but with all the advanced technology available to us today Drs are finally learning more about it.

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  7. I’m 18weeks. I’m having bleeding/spotting.. They see 9cm unfused area. Due July 7th 2016.
    Scared. Idk what this means. I’m an RN. I work as a hospice nurse. I am put on complete bedrest.
    The unfused area is neat the cervix which is causing the bleed. The doctor said that if it was higher… then it would not bleed.
    I got recommend to see a high risk specialist.
    This is my 5th pregnancy. I have a 4yr old and 2yr old. Miscarriages 2014 and 2015, both required D/C.

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    1. My separation was 5cm when they found it at 19 weeks and closed completely by the start of my 3rd trimester. It was also not by the cervix so I did not experience the bleeding. I imagine scared is a mild word for what you are feeling right now, especially on complete bed rest with two small children. Just try and keep in mind that late fusion can and does occur. I have, thanks to this post, heard numerous stories in the last year of women who also have experienced aminon-chorion separation which has resulted in a late fusion. I suspect the condition is not as rare as previously suspected and that advances in the clarity of ultrasound pictures are what is causing it to be caught more often than it use to now.
      At this point in our pregnancy we took things day by day, celebrating each one that got us closer to 24 weeks. After we hit 24 weeks we celebrated each week that went by. I will keep you and your baby in my thoughts. Please update if you have a chance.

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  8. Hi juse come across your blog. I have got an amnion seperation at 16.4 weeks. Small area of 26mm x 14mm. It was explained wrongly to me by the registrar who explained it as the placenta coming away. Not the 2 membranes seperaring. I feel fustrating and confused. I have been signed off work and am trying to too rest as much as possible. I have a rescan at 19.5 weeks that is still a week and a half away. Just wondering what the extent of your seperation was and also how your pregnancy progressed. Thanks for your help

    Steff

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    1. Hi Steff, I am sorry I have actually been away from the computer as we have been battling Hand, Foot, and Mouth disease over here 😕 I hope everything went well with your 19.5 week scan. My separation was described to me as moderate at almost 20 weeks and did end up closing. I hope that helps and your pregnancy is uneventful. I can’t believe the registrar explained it as the placenta coming away, that must have terrified you!

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  9. Hi Sara, congrats on the arrival of your daughter.

    My water ruptured at 19 weeks and it turns out it was from amnion chorion separation. It’s has been 2 weeks and there is almost no water left for the babies lungs to develop.
    I was wondering if your water also ruptured during your pregnancy?
    Thank you

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    1. Hi Rima, I am sorry to hear that your water has ruptured. I did not experience that myself as my separation was at the top of the sac. I will be keeping you and your baby in my thoughts during this stressful time.

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      1. Hi Sarah, Im happy that you had a great outcome with your baby.This gives me hope as my daughter was just told this at her last ultrasound at 22 weeks. We will hope for two beautiful babies.Do you have a picture of your baby?

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      2. Hi Linda! I hope everything goes well with your daughter’s pregnancy. Our little Catriona is petite, but developmentally she is right on track!

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  10. Hi Sarah! Thank you so much for sharing your experience with this. I was just told I have chorioamniotic separation at 18 weeks. The doctor had no information for me at all about this which was very stressful and led me to google it and read everything I could which to me sounded absolutely awful and hopeless. All I could find was info and articles about trisomy 21 abnormalities and still births and inutero death. Your words are the first ones that have given me any hope for possible late fusion or a normal positive outcome. Thank you!!!

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