Just diagnosed with TTTS-so scared and confused-please help!

I saw the MFM Dr last night b/c I have been bleeding, have a subchorionic hematoma and placenta previa. I'm also pregnant with twins-16w5d.

Well found out last night that they have twin to twin transfusion syndrome and the Dr made it sound like an emergency-he referred me to a Dr Quinterro in Tampa for surgery this weekend. He said the smaller one you couldn't see the bladder on but he did look at their hearts extensively and didn't say anything about problems there. So I came home to do research and found TTTS Foundation. The woman there said there were 15 questions to ask to determine if I need surgery and theres a Dr in Milwaukee that does it also (I'm in Chicago) named Dr DeLia who tends to treat this conservatively-bedrest and Boost protein drink, with surgery as the last option. But I have all these statistics in my head (surgery has 95%that one will survive, 75-80% that both will, but with no surgery I think it drops to 50% hat one will make it, 30% that both will-granted that is from Dr Quinterro though.) I just have no idea what to do. I was thinking with surgery I could go back to a more normalish life, this isn't really a time where I can be on bedrest for the rest of my pg, we need my income. Of course I will do whatever the babies need, but I need advice, inspiration, sucess stories or something!

On one good note the previa is gone

 

Read the post about 20 posts down. TWO HEARTBEATS by Waterguzzler. She just had the surgery done by Dr. Q and it was a sucess. She would be a good resource for you.

Take care and I will say a prayer for you and your babies!

 

I've been reading posts on here for a long time and have read success stories of TTTS. You and your babies are in my prayers. As the previous poster mentioned...read the "TWO HEARTBEATS" post and you will find reassurance.

Best wishes for a happy, healthy pregnancy and beyond!!

 

And there is another new mum on here whos daughters have had the surgery.... I remember she has posted a little in the May/June mommies thread, and on one of the last pages. I can't remember her name sorry (her daughters are Grace and Sadie). PM her and waterguzzler and I am sure they will give you lots of support and encouragement. You and your babies are in my thoughts.

 

I had TTTS with my twins - I talked with both dr. delia and dr. quintero. i urge you to talk to both of them. if you contact dr. delia's office he will contact you personally and talk with you. i'm not sure if he's as conservative as you think - if you qualify for the surgery (meaning the TTTS is at a point where it is serious enough to warrant surgery) he will do it. since you are closer to him, it would make sense to go there, rather than FL.

my TTTS stabilized with bedrest and boost drinks, and i never "qualified" for surgery, but i would have done it in an instant. i stayed on bedrest and got at least weekly checks with my peri to see how they were doing.

i would call dr. delia, pronto - right now - call or leave messages or page him. he's terrific. and even though i was never officially their patient, they called me to see how i was doing the whole time!

also, contact mary at ttts foundation and she will send you some info. and get on the message boards there.

 

dmw is the name of the person I was talking about. She had the surgery with dr Q.

 

Oh boy, do I know how scared you are! We were diagnosed on Christmas Eve at 15w4d. We were immediately transfered to Dr. Q and were monitored weekly by his team, as well as by a perinatal cardiologist because there were some heart issues. The issues were determined to be manifestations of TTTS and we've been told that they would resolve themselves after treatment. They were right bc we already saw improvement 24 hours after surgery! We waited for 3 wks until we qualified for the surgery and it was the most excruciating time of our lives. I told the u/s tech at our appt on Monday that if we had to wait another week I was going to scream. Fortunately we didn't have to.

As far as the bedrest goes, I am only on bedrest until next week. I had the surgery on Tuesday and I go back to school next Tuesday for a 10 hour clinical (I'm a last semester nursing student). They have cleared me for that, unless, of course, my uterus decides to be ticked off, which it hasn't In 4 wks our baby girls are considered out of the woods, and that's only bc within that amount of time there heart and cord issues should have resolved themselves if they truly are related to TTTS.

I urge you to start making calls now, even before your doc makes them for you. Mine were very pro-active, but I believe that my calls made them more familiar with me personally, and that helps. I actually emailed Dr. Quintero on Christmas night and I received a reply from him the very next morning around 8:15. I know nothing of Dr. DeLia other than I've heard of him and know that he's also well known. I live near Tampa, though, so there was never any reason to investigate other options since we are so close to Dr. Q and his team.

Please feel free to PM me. I don't know that I can offer you any help, per se, as I am brand new to this as well, but I can and will most definitely offer you all kinds of support. I'll even give you my number if you want to talk over the phone.

:hug:

 

Children's Hospital Medical Center Fetal Care Center does the surgery,too, and they are closer to you, I think. I had severe TTTS but was diagnosed later so mine was controlled with 3 amniotic fluid drains, in hospital bedrest for a month and continous monitoring. I will be praying for you,too.

 

Hi there, I am with you. My diagnosis came at a generally similar gestational age as yours--15.5 weeks. I was at Stage II, possibly III (depending on who you talked to) with no sign of bladder and the donor baby basically down to nil amniotic sac, etc. It was all very sudden--my regular OB appointment that morning went from "congratulations! You're having girls!" to "We think this looks like TTTS & the maternal-fetal specialist in town will see you as soon as you leave our building". Our heads were spinning.

I would encourage you be proactive in seeking out potential treatments. I took many others' advice and spoke with Mary at the TTTS foundation, Dr. Delia from Milwaukee (who personally called me back and we spoke for 45 minutes), and Dr. Quintero's staff in Tampa. Those are the people we spoke with; I'm sure there may be others but we felt that we covered our bases to make a needed quick decision. We felt good about our decision. From diagnosis to surgery was one week.

As background, our maternal-fetal specialist was excellent and he recommended surgery (which we were fine to do IF that seemed the best option) but his recommendation to go Philadelphia for surgery fell through when the surgeons there refused to do my surgery until I was 18 weeks along. The situation was too potentially dire for the twins to wait several weeks, so we researched and pushed our specialist to inquire with his colleagues across the nation about reputations of other surgeons, including Dr. Quintero. We received recommendations for Dr. Quintero for our situation. I've heard wonderful things about Dr. Delia as well; but his preliminary response to my situation was that I should try bed rest and Boost (which I did as well, before and after the surgery initially). But we decided immeidate action via surgery would be the best option for us.

I had surgery at 16.5 weeks and was on limited activity for about two weeks afterward ordered by my doctor (not Dr. Quintero) plus I drank 3 boosts a day. It's been 6 weeks now and I am on regular activity, although I do try to take it easy for an hour or two a day (if I can) laying down on my left side when my toddler naps.

And our doctors consider the TTTS cured!! It is nothing short of a miracle in our minds. We had a phenomenal experience with Dr. Quintero and his staff and all the medical personnel in Tampa. It was a very frightening position to be in, but it all worked out beautifully. Now we are just hoping to have a generally uneventful remainder of the pregnancy--whatever that is!

Don't hestitate to contact me if you have further questions or want to talk!

Diana