TTTS (Twin to Twin Transfusion Syndrome)

TTTS

As many of you have seen on Facebook or Instagram, we were just diagnosed with TTTS or Twin to Twin Transfusion Syndrome. For technical terms look here. Basically, one twin passes all or his/her nutrients to the other twin and doesn’t get enough back. It is dangerous to the donor because they basically starve and dangerous to the recipient because it receives way too much blood and fluids.

Somehow we made all of the tiniest percentages. Not only are we having twins, but they are identical. Not only are they identical, but they are in the 8%-10% who have TTTS.

Read here about finding out we were having twins and the other few updates. Blogging is so therapeutic and helps me process things. So I’m taking a 30 minute break from crying to write this update for all of you asking.

Today (January 4th) I went in for a routine sonogram and check-up. Nate didn’t come with me because he was busy and this appointment was no big deal …

After my sonogram my doctor met me in the exam room. “Hi Hannah. I have bad news.” For some odd reason I thought he was joking (maybe since this was my first appointment with this new doctor). But, as he sat down and said the words “Twin to Twin Transfusion Syndrome” I knew it was no joke.

My precious little twins were not doing well. I started to cry and he gently handed me the tissue box.

After explaining Twin to Twin Transfusion Syndrome he went over my two options and the horrifying statistics.

Twin to Twin Transfusion Syndrome Treatment

 Option 1: Have a procedure done in Lubbock to drain the fluid off of the larger twin. This only has a 50% success rate of saving one baby.

Option 2: Have a procedure done in Houston to separate the blood vessels that are passing the nutrients back and forth. This only has a 70% success rate of saving one baby.

Both have have lots of possible complications and not great success rates. Both are scary. Our doctor said that we too early in the pregnancy to go to Houston. They normally only take babies 18 weeks and older.

So now it’s just a waiting game. Will their tiny hearts keep beating until I can get surgery? Will they make it through the surgery? Will they come prematurely?

Post Doctors Appointment Update

The afternoon was a whirlwind of calls, texts, crying, decisions, and making life altering plans. Our doctor called the doctor in Houston and we were cleared to head down there for a consultation on Monday. If I am a candidate for the surgery they will operate that day or the next.

There are pros and cons of going now. Thankfully our doctor made the decision for us so we have a lot of peace. Since we are only in a stage 1-2 out of 5 there is a higher success rate. But since the babies will only be 16 weeks, 3 days, they will have a lower success rate. But we can’t really wait or they could pass away.

Procedure Follow-up

If one or both of the babies makes it then we will have follow-up sonograms weekly. There are lots of possible complications, but those don’t need to be worried about right now. I will be on complete bed rest for a full week. Yikes with a toddler.

Conclusion

Nate and I’s hearts have been breaking today. The thought of loosing two babies is crushing. We already love them both so much. We are extremely grateful for all of the thoughts, prayers, messages, offers of help, food sent, and texts. Community is so comforting.

Of course we want to walk away from this trail with two healthy baby girls. But, whatever the outcome turns out to be, God will still be sovereign, loving, and good. He loves our two babies more than I ever can and that’s enough for me.


2 Responses to TTTS (Twin to Twin Transfusion Syndrome)

  1. Dawn Kiffmeyer says:

    Hello Hannah, my heart breaks for both of you and your families. I sent a message on FB also, but just wanted you to know that I have a dear friend that went through this 15 years ago, ended up having the ablation, and were lucky enough to have 2 beautiful, healthy boys! I pray that you have the same results. If you would like me to put you in contact with him, he said he would be happy to talk to you! He will also pray for you, as will I! I know your aunt, Kim through the dance studio. May God bless you!

    • Hannah says:

      Thank you for reaching out. Hearing success stories gives us such hope. I would love to hear from him if he has time. If you send me a message on FB, I will send you my number. Thank you for thinking about us during this difficult time.