Question about TTTS for friend

A friend from another forum posted that she will need to terminate her pregnancy due to TTTS at 15 weeks. She's very heartbroken, understandably. I asked her if she'd had experts look into her situation, and her response was as follows:

Unfortunately when it occurs very early (15 weeks) the effects are catastrophic. Also bec there was such a dramatic change in the sonogram in two weeks the connection is very large. In the early stages of fetal development any time without the proper blood supply causes huge neurological deficits. Treatment can be done starting at 16 weeks but morbidity in almost certain. Treatment is successful when the fetuses are already at a viable stage (late twenties...) even if it would have occurred at 25 weeks I was told a termination would be recommended.


Is this true? Is there anything that a specialist can do at this point?

 

She needs to see a specialist for a second opinion if nothing else. We were given so many different extremes of outcomes and treatments for our issues, I don't even know what could have happened had we took the word of the first doctor. Please press to see if she would be able to get a referral.

 

http://www.tttsfoundation.org/faq.php

 

She needs to get a second opinion. I am thinking of her and her sweet babies.

 

The TTTS Foundation website says the laser surgery can be up to 25 weeks.

 

I recall a specific doctor being mentioned that has done a procedure for many TTTS moms during pregnancy (laser?). IIRC, he is located in New Orleans. Does anyone know who I am referring to?

 

No, but we looked into Children's Hospital of Philadelphia. There's also one in Cincinatti. I'm sure there are more, but that's all I remember.

That website has forums as well. I'm sure those ladies would have tons of info to share.

 

Thank you for the information.

 

I have no TTTS experience but I have heard of the dr you are talking about, I am trying to find the name!!! Seems like someone on TS who delivered not long ago was a patient of his????

 

I've heard of Dr. Deleo (I think), but not sure where he's located. I'm sure it's a very scary time for her and I hope that she's able to get a second opinion with a more positive outcome.

 

Ruben Quintero. But I think he is in Tampa Fla. Not New Orleans

 

Yes! That's his name. Thank you.

Unfortunately, she says she got four opinions and her husband is a doctor.

Thanks though for all the information.

 

That is so heartbreaking. I wanted so badly to hear that it was just a lack of information/resources. My thoughts are with her. I'm so sorry.

 

My boys were diagnosed at 20 weeks...probably developed before that. I went to CHOP and they were amazing.

They should have referred her to CHOP immediately since that is the closest hospital that offers the laser procedure..

 

Why would they recommend termination even if it occurred at 25 weeks??? That makes no sense...I really hope these docs know what they are telling her...this is a rare and specific condition and many (even high risk) docs really don't know current practices ans statistics..

 

I think she is 15 weeks

 

She is 15 weeks. I forwarded the information, told her there are experts and her response was the above.

 

"even if it would have occurred at 25 weeks I was told a termination would be recommended."


I took that from what she wrote you...??? Why would they say that???

 

I have no idea why she wrote that. I can only hope that she got the right information.

 

We have 25 weekers where I work all the time. 25 weeks is VIABLE!!!! Yes, very critically early but able to live outside of the womb. If she is 15 weeks I would recommend Cincinnati Childrens Hospital Fetal Care Center. They are experts in Twin to Twin and other fetal surgeries. Good luck to her and her family.

 

Unfortunately, I've learned that some people aren't too willing to listen to others and will give them the message that they are fine doing their own thing. I gave her the information and that's the most I could do.

 

You did a great thing by giving her the information. Thank you

 

She really should call Quintero. He is no longer in Tampa, but moved to Miami. He is amazing. At least she could have some hope. If she called today, he would have an appt for her early next week. He moves mountains for his patients. And yes, this is coming from one. His wife is an IUGR specialist and we saw both of them weekly while I was pregnant. I can't imagine giving up without talking to at least one of the leading experts in the field. The other leading expert is Dr. Delia (in Min.).

 

You did the right thing by reaching out to her. It's very sad and I'm very sorry she's going through this.

 

I can't imagine either, I would be on the first plane to Miami!!

 

Ditto.

 

I am late to reply to this post, so I am sure your friend has already proceeded with something.

Many cases of TTTS are managed/treated at the gestational age of your friend's babies. Perhaps something about her particular circumstances is preventing that.

What I do know is that treatment after 25 weeks, at least laser surgery, is not performed. At most, they'll perform amnio-reduction which yields mixed results. The recommendation of termination at 25+ weeks seems absurd, to put it mildly. My boys ere diagnosed with acute, severe TTTS at 26.5 weeks and were immediately delivered. Today, they are thriving.

I am no expert, but I certainly wouldn't take the information that has been posted and make decisions solely based on that. It seems to conflict with much of what is known about TTTS treatment.

 

I am having identical twin girls and was diagnosed with TTTS stage 2 at 16 weeks. I was sent to CHOP and had the laser surgery done at 19 weeks. The next morning at my sonogram the doctors could already see improvements in the babies. I would and hope that she would get a second opinion.