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You are here: Home / Blog / TTTS Awareness on World TTTS Day 2016

TTTS Awareness on World TTTS Day 2016

December 7, 2016 By Shann 12 Comments

TTTS Awareness

December 7th is World TTTS Awareness Day. A number of prominent landmarks will be lit in blue to symbolize the fight against this terrible syndrome.

Learn and help in the fight on World TTTS Awareness Day

I’m going to share a few facts with you about Twin to Twin Transfusion Syndrome, and I’m also going to share why this is such an important cause to me. I hope that once you finish reading this post that you’ll join me and countless others in our fight to save babies.

TTTS awareness is the most important thing.

What is TTTS?

From the TTTS Foundation’s website

-Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.

-TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.

-The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.

-The common placenta may also be shared unequally by the twins.

-The events in pregnancy that lead to TTTS are all random.

-TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.

-TTTS can happen to anyone.

It happened to me

While they say that TTTS is very rare, my twins started showing signs when I was 14 weeks pregnant. One of my twins was 25% larger than the other, which can be a sign of either TTTS or SIUGR (Selective Intrauterine Growth Restriction or unequal placental share).

You can read the rest of my story HERE.

Today, I want to share another family’s story.

It happened to Sierra and Allen

As a mother to TTTS survivors, I belong to an online support group. When I asked for other stories to spread awareness, Sierra emailed me right away. I’m so happy to be able to share their story with you today as told by Sierra, on World TTTS Awareness Day.

The Diagnosis

We have identical girls. We were barely 15 weeks when they caught it (TTTS). We were stage 3 (TTTS is commonly staged in severity from 1 to 5.) Thankfully, we had to make an early appointment due to a car accident, or it would have been another week before we had an ultrasound. Our Baby A was getting way too much.

We had to travel about 4 hours away (the hospitals around us are not equipped to handle complicated multiple pregnancy situations) to get the laser procedure, and pray it worked.

That was when we found out we were having girls, as well as baby a (the recipient) developed pulmonary stenosis.

For a month, we traveled those four hours once a week to make sure everything was going smoothly, as TTTS could still come back.

Everything went well, so we went back to our regular doctors.

More Complications

About a month and a half later, they feared TTTS was back, so for another two weeks it was a 4 hour trip. That’s when they decided if I could make it to 34 weeks, they’d do a c-section.

I was 33 and 4 days at a cardiologist appointment 2 hours away for Baby A, and I started contracting. They calmed down enough for me to  go home and set up my scheduled c-section for September 16, 4 days later (34 weeks.)

The contractions started again, and Baby A pushed herself all the way down and Baby B was as far up as she could.

They both stopped moving.

Delivery

They sent me 2 hours away for observation, and then changed their minds, and we did an emergency c-section.

TTTS Awareness
The day before they were born. You can see one is up, and one is down.

I don’t remember much of the first night, as they gave me something I was allergic to. This caused them to give me Benadryl, which knocked me out.

The next day, actually afternoon, I got to see both girls. Baby A (Lillianna) was 4 lbs 10 oz 18 in, and Baby B (Annabella) was 4 lbs 13 oz 18 1/2 in.

Lilianna and Annabella's story of TTTS Awareness

 

Then came the doctors. Lillianna’s heart was worse than they thought and she needed to be transferred to a different hospital (another 2 hours away) for surgery that night.

So, we picked the hospital and she was transferred. My husband and mother-in-law went with Lillianna, while I stayed (wasn’t released for four days) with Annabella.

The day after they released me, Lillianna had her heart surgery. Thankfully, I was able to be there, and bring a nice sized supply of milk for her.

TTTS Awareness from 2 survivors

The girls stayed in the NICU for about a month. Lillianna came home on oxygen and a pulse ox, and Annabella came home the day after perfectly healthy.

TTTS Awareness

Today

We just celebrated their 3rd birthday! We monitor Lillianna’s heart every 6 months, as she’s not in the clear yet, but they are both healthy and spunky as ever.

TTTS Awareness

 

TTTS Awareness

How you can help

Thank you so much to Sierra and Allen for sharing their story and their precious survivors with us. I’m so grateful for their help on World TTTS Awareness Day.

You can also help #FightTTTS.

Share this post, talk with your friends, or visit the TTTS Foundation website today. If you, or anyone you know, is pregnant with twins, please see a Maternal Fetal Specialist and get an early ultrasound.

The more TTTS awareness that there is, the greater the chances of saving more babies.

Thank you for your help!
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, TTTS, Twins Tagged With: Awareness, babies, cause, December 7, fight ttts, Health, heart, hospital, identical twins, micro preemie, NICU, oxygen, pregnancy, premature birth, pulse ox, TTTS, ttts awareness, TTTS Foundation, Twin to Twin Transfusion Syndrom Foundation, twin to twin transfusion syndrome, Twins, World TTTS Awareness Day

Comments

  1. Chrissa - Physical Kitchness says

    December 7, 2016 at 9:31 am

    I have two really good friends with identical twins and I hadn’t heard of TTTS. WOW. SO happy these sweet girls (and your boys) are healthy !!!

    Reply
  2. Becky @Disney in your Day says

    December 7, 2016 at 12:29 pm

    They are so adorable! I’m definitely much more aware of this cause from following your blog, it’s not something I would have known much about otherwise.

    Reply
  3. Mistle says

    December 7, 2016 at 4:45 pm

    Thank You for bring awareness to TTS. I never knew anything about TTS until I came across your blog. My boyfriends mom is a twin, so there is a chance that we could have twins in the future, so this is so helpful to know about. Lilliana and Annabella are beautiful! I hope they continue to do well!

    Reply
  4. Stef@CraftyChristian says

    December 8, 2016 at 8:44 am

    So sweet! Love that they are doing so well now!

    Reply
  5. Amanda Deavers Winter says

    December 8, 2016 at 10:26 am

    You are so brave for posting this and bringing awareness.

    Reply
  6. Belle Bermudez-Tubel says

    December 8, 2016 at 11:20 am

    Thank you for making everyone aware about TTS! This is very informative!

    Belle | One Awesome Momma

    Reply
  7. Stacy taylor says

    December 8, 2016 at 1:34 pm

    Thank you for explaining, this is all new to me so I’m glad I know what TTTS is.

    Reply
  8. Caylee says

    December 8, 2016 at 5:58 pm

    Thank you for sharing about this. I had no idea!

    Reply
  9. Georgiana says

    December 8, 2016 at 8:33 pm

    I hadn’t heard of this. So glad you are bringing awareness! And I’m always glad for a happy ending 🙂

    Reply
  10. Mary mozingo says

    December 8, 2016 at 8:48 pm

    Beautiful little girls!! It tugs at my heart strings to hear these stories! Blessed for sure!

    Reply
  11. Megan Zakrewsky says

    December 8, 2016 at 10:00 pm

    Wow thanks for bringing awareness to this – I have never heard of it and I love being more aware of things like this.

    Reply
  12. Breyona Sharpnack says

    December 9, 2016 at 6:55 pm

    Wow what an amazing story. I am glad you shared this because I have friends with multiples. I am glad you had a good outcome and your babies are thriving!

    Reply

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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.

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