• About Me
  • Privacy Policy and Disclosure Policy

Shann Eva's Blog

A peek into my messy life with 3 boys

  • Home
    • My Delivery Story
    • Twin Pregnancy
  • Work with Me!
  • Money-Saving Links
  • Blog
    • Shann’s Favorites
    • Shopping
    • Birthdays
    • Health
    • Micro Preemie Mondays
  • Submit Your Story
    • Share an Update
  • Twin pregnancy
You are here: Home / Blog / A TTTS Journey with Amanda and Andy

A TTTS Journey with Amanda and Andy

December 9, 2015 By Shann 15 Comments

Twin Mom Support

Both during and after my twin pregnancy, I was lucky enough to find a great support system online. I found a great group of twin moms that had been through or were going through TTTS (Twin to Twin Transfusion Syndrome.) One of those moms that I met was Amanda.

Not only have I gotten to talk to Amanda and her husband, Andy, in our Facebook group, but I got to meet their whole family 2 years ago (has it already been 2 years?) at The TTTS Foundation’s 25 Anniversary celebration. It happened during Twin Fest, and you can read more about it HERE.

Now, I’m happy to share with you Amanda and Andy’s story. This story is a combination of both Amanda and Andy’s points of view, with a few explanations from me thrown in there.

fight TTTS

A Journey with TTTS

I went in at 7 weeks to confirm pregnancy and get a due date established (I work in retail). I found out at that point that I was having twins. I was ecstatic!

Then the doctor came in. She informed me on vanishing twin syndrome, saying that one might not become viable. She also told me that they were Mo/Mo (which means they were sharing both a sack and a placenta, other than conjoined the most high-risk twin pregnancy. I was told to come back in 2 weeks.

At my 9 week check up, there was still no membrane (which means the babies were still thought to be in the same sack.) At this point, the same doctor recommend a selective pregnancy! What?!? I said no way, and we went on 2 weeks later.

At 11 weeks, a membrane appeared, but it was thin and whispy. (This changed the twins from sharing a sack to each having their own sack, but still sharing a placenta) which is called Mo/di. From that point, I was basically put on a normal OB checkup list. The doctor informed me not to Google, as there is way to much information and lots of it is meant to scare you. (I googled anyway and found the TTTS website, praying I would never get that.)

16 weeks, they said everything was looking good and to schedule my 20 week appointment. They never mentioned an MFM (Maternal Fetal Medicine specialist, which all Mo/Di twins should see.)

19/20 weeks surfaced and I was IN PAIN! Like labor pains etc. I went in for my appointment ultrasound, they started the ultrasound, then said- oh! You have twins? You needed to make arrangements with an MFM. We can’t see you today. Great! I called for a referral and they couldn’t see me until 21 weeks.

I saw that same doctor during the 20 weeks appointment and voiced my agony, to which she replied, you’re having twins! It will be uncomfortable. There will be difficulty breathing at times because of the way they are positioned. You’re measuring 38/39 weeks which could be normal for you since you have had other children- more space to move around in there. (Note…this is NOT normal) For the pain, you can take Tylenol and icy hot for topical help.

By my 21 week checkup, I had grown even more. Mind you, I was also working the week prior! My contractions were now every 15/25-1 1/2hr minutes while I was on my feet! I left work on my lunch to go to my appointment.

The Diagnosis

I finally saw the MFM. We did the ultrasound, and I was diagnosed. My MFM was blunt yet caring and told me EVERYTHING I needed to know short-term. So the doctor came in and told me they were identical, then told me what was wrong. I have a condition called twin to twin transfusion syndrome (TTTS). Basically, the babies have some interconnected blood vessels, so one baby is getting too many nutrients (Recipient) and one baby is getting too few (Donor.) (This causes one baby to have a large amount of fluid in their sack, and the other to hardly have any.) My babies are in trouble.

I had an amnio reduction once my husband had arrived and immediately felt relief. They drained over 3L of fluid out of my belly. The thought is that this will change the pressure inside and give the Donor more room and balance the fluids/nutrients between the two babies.

My MFM team was AMAZING! Their support was like being part of my family. I opted for amnio reduction first, and then waited a couple of days for the results to see if it worked.

We came back and the results were not good. We found out that our recipient baby, Cody, had re-accumulated more fluid, and Christian, our donor baby, had lost fluid. Not good. We talked about our options, we could keep doing amniocentesis, or we could do the laser surgery. There have been over 3000 of these surgeries done worldwide. The only place in MN that could do it would be Abbott, they’ve done 26 surgeries. North Memorial, our MFM team, highly recommended the Children’s hospital in Cincinnati (the closest top 3 center to us) they’ve done over 600 procedures. My original MFM was the one to steer me towards Cincinnati, saying that if her sister was diagnosed the same, she wouldn’t hesitate to bring her there. Funny, how the MFM team occupied the same hospital as my ignorant doctor.

We drove over to Abbott to meet with the doctor there since they were local while we waited to here if Cincinnati would meet with us or not.

The Abbott doctor was very nice. We talked about their outcomes in their cases so far, and they have an 80% survivability rate for 1 baby, 33% for both babies. He was confident he could do the surgery, but wanted us to consider Cincinnati as well, he wanted us to be confident in our decision that we did everything we could for the twins. He didn’t want us to go to Abbott just out of convenience (and by the off-chance there were complications, he’d hate for us to second guess our decision.)

We called Cincinnati in the Abbott parking lot. Amanda spoke to a very nice nurse who discussed their outcomes. They have a 91-93% chance of survival of one baby, 68-70% for both babies. This was a huge factor in our decision.

Now we were off to Cincinnati, Ohio, for a special surgery called a laser photocoagulation procedure. (This procedure attempts to sever the blood vessel connections between the babies.)

Their Outcome

Amanda and Andy met with the team on a Monday, and Amanda had the laser surgery on Tuesday. They severed 35 connections and took out another 3 liters of amniotic fluid.

On Wednesday, they check and found TWO heartbeats. Both babies were doing great!

For the rest of her pregnancy, Amanda had to take it easy and was on modified bed rest. She had to keep up with appointments with her MFM, while still taking care of her family. She made it all the way to 33 weeks, which is amazing.  She went into spontaneous labor,  and looked good for natural delivery, but after her water broke, she found out she needed an emergency c- section. They thought the placenta was separating from the uterine wall.

Cody and Christian were born on August 27, 2012. Cody was taken out first at 2:44pm (they usually take Baby A out first, so that was normal). Christian was taken out at 2:45pm. Cody was 5 lbs and 17 1/4″long, Christian was 4 lbs 2 oz and 17″long.

TTTS Survivors

What every Twin mom needs to know

I’m so happy that Amanda was sent to her MFM or their outcome might be much different. Her original OB did not know enough about twin pregnancies or TTTS, as is the case with many obstetricians.

If you are pregnant with twins, you need to see a high risk specialist called an MFM. Early and frequent ultrasounds are so important. You need to be the biggest advocate for your babies.

From Amanda

Unfortunately, I had to see that OB one more time because she was the only one available at the time. We had the contraception conversation, of which I told her no to getting my tubes tied. Her body language and tone made me feel like she wanted me to regret my decision, but, I never did!

After the babies were born and I came in for post c-section appointment, I was able to bring them out of the NICU. They were doing fantastically well. I saw the OB in the hallway and made sure she was aware they were BOTH present and BOTH survived.

This was my journey with the unknown and my frustration with potentially ignorant, or misinformed doctors. It was also our journey of finding those that helped save our boys. This is only at hometown perspective, not surgical perspective.

TTTS Survivors

TTTS Survivors

If you, or anyone you know, is pregnant with multiples please visit the TTTS Foundation’s Website.

Thank you so much Amanda and Andy for sharing your story. Please feel free to leave comments and/or questions below.
If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Filed Under: Blog, Health Tagged With: amnio reduction, amniotic fluid, connections, laser surgery, maternal fetal medicine specialist, mfm, mo/mo twins, modi twins, placenta, TTTS, twin to twin transfusion syndrome

Comments

  1. My Urban Family says

    December 9, 2015 at 9:02 am

    The internet is such a wonderful place for finding support and friends when you need someone who knows what you are going through. I’m glad you were able to find that and it’s great that you can now share her story!

    Reply
  2. nmiller00 says

    December 9, 2015 at 9:26 am

    My sister-in-law is going thru a lot of this right now. I love sharing these stories with her to give her hope and strength!

    Reply
  3. Mistle says

    December 9, 2015 at 10:23 am

    I have learned so much from reading today. I do not have any children but my boyfriends mom is a twin, so we could potentially have twins one day, so this is really helpful to know. I’m so glad everything worked out for Amanda, Andy & their boys!

    Reply
  4. Becky @ Disney in your day says

    December 9, 2015 at 10:39 am

    Wow, it’s scary to think how much her OB didn’t know or tell her! So glad the family is doing well and that she made it so far into her pregnancy!

    Reply
  5. thewordhermit says

    December 9, 2015 at 10:58 am

    What an amazing and heartwarming story! I am a twin myself!

    Reply
  6. Chrissy Z. @ The Brave Wanderer says

    December 9, 2015 at 1:07 pm

    What a great story! Loved reading and got a teensy bit emotional! Thank you for sharing! Wonderful!

    Reply
    • Shann says

      December 9, 2015 at 7:06 pm

      Thank you so much for reading!

      Reply
  7. Erin says

    December 9, 2015 at 3:24 pm

    What a great story, thanks for sharing! And how cute are those kids!

    Reply
    • Shann says

      December 9, 2015 at 7:05 pm

      Thank you for reading and helping spread awareness!

      Reply
  8. Carol Cassara (@ccassara) says

    December 9, 2015 at 3:40 pm

    My niece had twins, so she saw your story and loved it.

    Reply
    • Shann says

      December 9, 2015 at 7:05 pm

      Thank you so much for sharing it with her. I really appreciate it.

      Reply
  9. Susannah says

    December 9, 2015 at 6:21 pm

    Wow! Thank you for sharing your story! I’m always so interested in learning things like this! Shame on your OB for not knowing how to direct you. I’m so glad both your boys are thriving! <3

    Reply
  10. globalmunchkins82 says

    December 10, 2015 at 8:51 am

    We have two friends that have healthy twins that also had ttts. It was scary at times… glad to see another happy ending 🙂

    Reply
  11. Angie Scheie says

    December 10, 2015 at 9:28 am

    Wow, my heart is all anxious just reading this story. I can not even fathom the level of concern you must have had from week 7 till the day they were born! Thank you for happy endings and your two beautiful boys!

    Reply
  12. Dana says

    December 11, 2015 at 5:37 pm

    What a journey for Amanda and her family. I am so glad to see that the outcome was a very favorable one! Cody and Christian are beautiful little boys!

    Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Meet Shann

Shann Hi! I'm a mom, writer, and dancer. I love sharing my parenting experiences, my healthy living tips, my money saving ideas, and our travel plans. My passion to help other women inspired this blog. I hope you'll stay a while and come back often.

Need Help Finding Something?

Follow Me

Subscribe to Blog

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Recent Posts

  • Writing as Therapy May 16, 2022
  • COVID: The (Not) Good, The Bad, and The Ugly Guilt August 20, 2021
  • Healthy Lifestyle: Making Baby Steps Back July 27, 2021
  • 2020 Year In Review: The Highlights December 31, 2020
  • Premature Birth Awareness: Helpful Vs. Hurtful November 9, 2020

Facebook

Facebook
MKE Moms Blog
Copyrighted.com Registered & Protected 
M6VU-YLWL-D4JY-XAO4

Copyright © 2022 · Blog Design by Quality Websites On A Budget

We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking “Accept All”, you consent to the use of ALL the cookies. However, you may visit "Cookie Settings" to provide a controlled consent.
Cookie SettingsAccept All
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
CookieDurationDescription
cookielawinfo-checkbox-analytics11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checkbox-functional11 monthsThe cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checkbox-necessary11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-others11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-performance11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy11 monthsThe cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.
Functional
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Others
Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
SAVE & ACCEPT