Twin-to-Twin Transfusion Syndrome Diagnosed - help

jillcanada

Hi All,

I'm 17 weeks pregnant with identical twins. Yesterday at our anatomical scan it was discovered that I have Twin-to-Twin Transfusion Syndrome (TTTS) and am now at high-risk of losing either one or both of them . Baby B is measuring 2 weeks behind Baby A. Needless to say I am devastated, but am trying to stay strong for the LOs.

I am not happy with the care I received yesterday. While the peri is a nice, older gentleman, he appears to simply be semi-retired, and has now passed me along to his other colleagues who know more about this disease. He essentially told me to "wait and see" and go home to do my research about the options he laid out for us. I acknowledge that I'm not a doctor, but my research says I should be seeing someone asap and am an ideal candidate for laser surgery, which also should be done immediately. Ughhh....

I've put myself on bedrest, and my in-laws are flying in to help me out while DH is out of town for work (he couldn't reschedule). I'm a teacher and I just couldn't face 48 middle school students who were anxiously awaiting the announcement of the babies' gender. (Little boys.)

Has anyone on here been through or is currently going through this? I could use some words of wisdom and positive vibes.

TIA.

Breenie29

Sorry, I don't have any advice, but just wanted to say that you'll be in my thoughts. Hang in there....

BelleBaby

Have you looked here:

https://www.uch.edu/conditions/pregnancy/index.aspx

pea-kay

Wait and see??? Your doctor sounds very blase about this!

Can you contact this woman?

https://pregnant.thebump.com/pregnancy/pregnancy-experts/articles/karen-moise-rn.aspx

BelleBaby

Also here:

https://www.swedishhospital.com/conditions_we_treat/womens_childrens_services/ttts.htm

 

Mrs. Destructo

Are you seeing a perinatologist (aka MFM or maternal-fetal-medicine doctor) or just an OB? You need to see a peri/MFM asap. If you are seeing a peri/mfm, you need to find a new one. Today. To find a good one, you can contact your local mothers of twins club and ask for suggestions. You can find your local club here:

link

 About your babies - were there any markers for t-tts other than discordant size? How were their fluid levels? Were there any signs of hydrops? Was your cervix length measured? 

 Hang in there - I've been there too. Luckily discordant growth doesn't always progress to full blown t-tts, and it doesn't always require surgery. I really, really hope this is the case for you and your sweet little boys.

weemodin

You're in Denver -- so not too far from Texas.  I know that the fetal center at Texas Children's Hospital in Houston has worked miracles for TTTS for another mom on here and her 2 girls.

 

https://www.texaschildrens.org/carecenters/fetalsurgery/twin_twin_transfusion_syndrome.aspx

Please contact them!

susanc07

you're in my t+p.  GL and ((hugs)).

bkjcwedding

FYI...Just sent you a long rambling response on the high risk board.   Again, let me know if I can help.

blairsgirl

You're in my prayers.  

Lizard1131

https://estherslittlewonders.blogspot.com/2010/05/happy-birthday-little-one-ders_04.html

 

I know she has a successful surgery in Texas.  You'll be in my prayers, and good for you for being pro active!

Lizard1131

https://estherslittlewonders.blogspot.com/2010/05/happy-birthday-little-one-ders_04.html

 

I know she had a successful surgery in Texas.  You'll be in my prayers, and good for you for being pro active!

MamaCrystal

I'm so sorry you're facing this.  I agree with pp's and think you should get a second opinion ASAP.  It's good that you know about it early on so that you can be closely monitored and have the necessary interventions if needed.  Keep us posted and I'll be thinking of you.

MrsAmyB

Please see someone who specializes in TTTS. There aren't too many in the US so it's unlikely your Dr. does. Two of the MFM's at my clinic do but they are in Seattle and some of the other posters seem to have Dr.'s closer to you.

mmbench

If you have any connections there, we talked with Dr. Quintero in Tampa, FL.  He was very open to talking to us via phone before we went to a local specialist.  Dr. Anthony Johnson was our specialist and is now in Texas.  Not the most personable guy in the world, but we have our babies.

anna2006

Which OB group are you with?  You need to get a referral today to an MFM group.  The two big ones in town are the University group and the Obstetrix group (PSL/Rose/Swedish).  I'm not sure that either does laser surgery but they may - if not, they will contact someone who does.  I know both these groups and I think the Obstetrix group is more responsive - why don't you call them today and see if they even need a referral?  Perhaps you can just get an appointment with them directly.  Good luck - there have been several success stories with TTTS on this board, so don't lose hope.

finallyreilly

You are in my T&Ps

Niki+Matt

How scary for you.  Best wishes on getting the care and answers you need ASAP.

Kellymsb

I dont have any experience to offer but just wanted to wish you luck. I will be thinking about you and the LO's.

One thing I would say is that you should find another Dr. if you dont feel that you are getting proper care.

TheNewFry

I don't have any advice to offer, but wanted to let you know I am thinking of you and praying your LOs will be ok!

janjag

sending T&Ps!

i read your newer post that texas is likely where you'll go.  but just to add another name - my peri, dr. david schrimmer, in san diego, is an expert in this area. 

littlewonders

Honey, first of all, big hugs to you. As you know by now, TTTS is a very, very serious condition. I was diagnosed at 17 weeks also, had the laser ablation a week later and battled the disease for 13 weeks on bedrest (10 of which in the hospital) and my dear DDs were born small - but healthy! - at 30w0d. You should contact Mary at the TTTS Foundation and Karen at the Texas Chilren's Fetal Institute (https://miraclesofmultiples.blogspot.com/) - both were excellent resources for us. You'll need to find the best doctor there is in your area and prepare to travel to another state for surgery. Even though more medical centeres offer it now, there's really only a handful that have done the procedure enough so you want to trust your unborn babies lives into their hand. Also ... stay on top of this, you should be seen for u/s at least twice a week. We progressed from a stage 1 to a stage 3 in 48 hours. There are also MANY cases, I should say, where it never progresses that far and you might not need surgery ... but you need to be seen by a doctor who knows what he's doing. You can e-mail me at estherslittlewonders@gmail.com

If you go back on my blog to Feb of 2009, you can see what the journey was like for us and what kind of options we considered. Keep us posted. You're right, you can't give up hope. Every single day for 13 weeks I faced the possibility of losing one or both of my daughters - and they just celebrated their 1st birthday yesterday!!

pekabluhm

My boys had TTTS. However ours was late in gestation. Since yours is so early on in your pregnancy I would think that you would be a candidate for laser surgery. One of the places that does it is not to far from you in Salt Lake City, Ut.  Here are some websites that my Peri gave me to look at. 

https://www.tttsfoundation.org/index.php

https://www.fetalcarecenter.org/

https://www.chop.edu/

I HTH and if you have any questions you are more than welcome to ask.  

 

pekabluhm

Here is the information for the doctor in Utah......

UTAH

Dr. Robert Ball, Dr. Michael Belfort
St. Mark?s Hospital
Maternal-Fetal Medicine Group
1140 East 3900 South, #390
Salt Lake City, Utah 84124
Phone: 801-743-4715
Nurse Coordinator: Carrie.Gonzales1@hcahealthcare.com
https://www.mfmutah.com/fetaltherapy.htm

babya2010

I don't have any advice but would like to tell you that you and the little ones are in my prayers. Keep us updated!

missuscooley

The same exact thing happened to me, except I was 18 weeks. I had a doctor that basically sent me away with a pat on the back and "good luck". It was awful! I called my regular OB the next morning and he referred me to a MFM at a hospital an hour away. I immediatley got in to see him and he calmed a lot of my nerves.

My story: my boys were also about 2 weeks apart and I ended up on bedrest and had weekly u/s with the MFM (sometimes 2x a week when the fluid looked low). I also maintained my scheduled appointments with my regular OB. I drank Protein shakes 3x a day as well. There is not really any scientific proof behind this but I was willing to do what ever it took, ya know?

I was induced at 36 weeks and delivered healthy baby boys with no NICU time. Ryan was 5lb5oz and Owen was 4lb11oz.

You do need immediate care and you need to be closely monitored. Stay positive and I am hoping for the best for you! Please update if you can!

kelliwill

I don't have any real advice, but I wanted to say that I am so so sorry you are dealing with this.  Sending you thoughts and prayers and take care of yourself.  Also, if you are not happy with the care you received, I think you should look elsewhere, at least to get a second opinion and see what they say/suggest.  I would search for any experts in your area and see them.  GL!