We have TTTS

Today, we saw the peri:

Well, we did find out gender. Identical girls.

However, we have TTTS. Being diagnosed this early is horrible and the prognosis is terrible. One twin basically doesn't have any fluid and is growing but is about 1 week behind the other. They both look good anatomically, though, so it doesn't look like there's anything else wrong with them.

We only have one treatment option, basically. To have surgery to separate the placenta so they're no longer sharing. And the situation has to be right for this even to be an option. Right now, the peri thinks we are a good candidate. This happens at clinics in Tampa, Milwaukee and Seattle. We have to hurry. If we don't get this, or the surgery doesn't work, we lose both twins at some point.

I never thought I would be faced with this. My heart is breaking. I am starting to accept that if we get them to delivery and they survive that it's a miracle. I guess 50 years ago, this wasn't even an option. I'm very thankful we can attempt this, but still.

If anyone has any success stories or advice, please let me know - I think we can use all the help, support and positive vibes we can get.

Jenny

 

Oh, I have no advice or experience but I'm sure someone else will. :hug99: I'm sorry you are having to go through this right now, I just wanted to say we will be sending positive vibes your way. Keep us posted. :hug99:

 

Jenny I have no experience with TTTS. However, if you go to the health issues forum you should be able to find someone who has had experience with this.

I wish you the best. I will pray for you and your babies.

 

I started to cry when I read your post. This is of course one of the biggest fears we all have, especially those of us who are having identicals. I can't offer any advice, but I will be sending out good vibes and prayers for you and your girls. Stay strong and keep in touch. Remember, that as long as you have this message board you are not alone!

Shannon

 

I am so sory you are having to go through this. Big :hug99: you x

 

Oh goodness, how terrible you must feel! I don't have any advice, but just wanted to let you know, you'll be in our thoughts and prayers.

 

I thought there was a clinic in Cincinnati, OH too. I just watched a show on Discovery Health about TTTS and how the surgery saved so many babies. I have identical twin daugthers that were Monoamniotic so I am know the stress and heartache you are going through. Call and get the surgery done ASAP - Please look around the mono website - www.monoamniotic.org - you will find alot of support there. We have had a few Moms that had TTTS surgery done and was very successful.

Please keep us posted.

 

Thinking positive thoughts that you will be a candidate for the surgery and that the surgery will be a success. My best wishes to you and your family.

 

I'm so sorry you are going through this. Lots and lots of :hug99: your way mama. (((((((POSITIVE VIBES)))))))
I hope everything goes well. Just keep us posted.

 

I'm sorry you and your family are going through this. I have the fear of this happening, but to have it come real must be so heartbreaking and frightening. You are definitely in the right place for support and info. :hug99: The TTTS foundation has a lot of info (tttsfoundation.org) and support too! We are all thinking and praying for you and your baby girls. Good luck and please keep us posted!

 

I'm praying the surgery will work. Get it done right away! :love0028:.

 

I'm so sorry you are going through this.

We were diagnosed with Stage 1 at 18 weeks as well and were told right away about the surgery.

The day we found out I did a ton of research. There is a TTTS website out there that is very helpful. I immediately started upping the protein in my diet as much as I could and added in protein shakes. I didn't care how much weight I gained, I just wanted my babies.

I truely believe that the protein helped because from the moment I started upping it, the TTTS stopped progressing. In fact, baby b got a lot of his fluid back to the point where the Dr said if we didn't have the original diagnosis, they'd have no idea they had it.

Around 30 weeks I stopped working and stopped with the protein shakes - it didn't fit into my "routine" at all. Immediately things started to progress again. I ended up delivering at 34 weeks because one of the babies was only gaining an ounce or two a week and was having reverse flow in his cord. After I delivered, the Dr's showed my husband the placenta and the linking veins. They honestly don't know why some cases progress and others don't and took the boys placenta away for research.


Hang in there. It was the toughest time ever in our lives. It's impossible to say what the outcome will be, but just do what you can - try and get as much bedrest as possible and definately up your protein as much as you can

*hugs*

 

Oh my gosh, get in touch with HealysBakersDozen-she is on the triplets and large families postings, she is a wealth of information and her last set of twins had this very badly but they did survive!!! Please do some investigation into this....not all centres are experts in this.

This is also a Fantastic website to direct you to speak to an expert doctor dealing with this situation
http://p198.ezboard.com/btheofficialtwinto...omemessageboard

Please keep us updated and I pray that your little girls do well.

 

I am so sorry you are going through this. We were diagnosed at 20 weeks with Stage I and I agree it was devastating. There is a LOT of hope though and a lot of success stories with the surgery and management of TTTS. I was never a candidate for the surgery as we haven't progressed past stage I and after I started the Boost High Protein drinks 3 times a day the fluids started to even out. At 28 weeks we are looking really good. When I was first diagnosed though I did what the PP suggested and went to the tttsfoundation.org website. I found a lot of information (some scary, but a lot hopeful), I found a great message board where I could ask my questions and share my fears with other families who have gone through this and I also found Mary, the foundation president who I contacted and asked a lot of questions of. The women on that board will encourage you to contact Dr. Rubin Quintero (Tampa) or Dr. Julian De Lia (Milwaukee) or both in order to get a second and third opinion on your case. They are the pioneers in the field of TTTS laser surgery. I personally have spoken to Dr. De Lia and he has been wonderful - keeping track of me and my case through this entire time even though I will never be his patient. The website should have numbers for them. Call them today! I wish you the best of luck - I hope that you are a good candidate for the surgery if you need it. Please keep us posted and don't lose hope! :hug99:

 

I'm sorry to hear this. :hug99:


Here is link to a sticky in the Heath Issues forum on the subject of TTTS with lots of information. I hope it helps.

http://twinstuff.invisionzone.com/forum/in...?showtopic=4895

 

I agree with the PP's -- you should really check out the TTTS foundation web-site and get in touch with their founder Mary ([email protected]) and give her your mailing address and phone number, and she will call you back within 24 hours -- and she can send you lots of good information -- also I know that several of the specialists will do a phone consult with you about your case.

Here are some of their information.

Dr. Julian DeLia (laser surgeon)
The International Institute for the Treatment of Twin-to-Twin
Transfusion Syndrome www.covhealth.org/stellent/groups/public/documents/www/co
E-mail: [email protected]
Telephone: (414) 447-3535
Mailing address:
TTTS Institute
St. Joseph Community Foundation
5000 W. Chambers St.
Milwaukee, WI 53210-1688

Dr. Ruben Quintero (laser surgeon)
Florida Perinatal Associates F etal Therapy Program
Web site: www.fetalmd.com/ttts.htm
Telephone: (888 ) F etal (338-2577)
E-mail: [email protected] or [email protected] (Mary Allen, R.N.)
Fax: (813) 872-3794
Mailing address:
St. Joseph's Women's Hospital
Fetal Therapy Department
3001 W. Martin Luther King Blvd.
Tampa, FL 33607


I personally know one person who had surgruy with Dr. Delia, and one who had surgury with Dr. Quintero. Both said they loved them. I have heard that Dr. Delia will get back to you within 24 hrs of a call or e-mail to talk to you about your case. Also, my Peri studied under Dr. Quintero -- and has nothing but GLOWING things to say about him - both as a person and a sergon. On the foundation, they also have a BB -- you should look at that too -- lots of people with experiances to share, and advice to give.

While we have not had to deal with TTTS (yet) -- with ID twins sharing a placenta, I have tried to be and knowlegable as possible on the topic. I'm so sorry you are going through this. You and your family will be in my thoughts and prayers!

 

I just wanted you to know I will be praying for you and your girls. TTTS was my biggest fear in this pregnancy; and I am so thankful that we haven't had to deal with it. Please keep us posted. I pray that the surgery is a success.

Jen

 

Oh I'm sorry, you're dealing with this. I don't have any experience with this, just hugs.

Jen

 

I am very sorry that this is happening, its a terrible thing, although I have no experience with it myself. But do believe in miracles, because they do happen!!! It did not look like our babies were going to make it past 20 weeks, but they did(for other reasons) I will pray for you and your babies, and I hope with all my heart that they will make it till at least 24 weeks.

 

Thank you all so much for the support - I talked with Dr. DeLia this morning -and he feels we should do bedrest and boost drinks for a week and see how things go - in our case, our "recipient" twin appears normal without excessive fluid. I can't believe I'm saying this, but I actually would feel better if we were going to get the surgery because then I would be able to know I am helping them.

I will keep you all posted - thank you so much for all the information and positive vibes - we need it!

Jenny

 

QUOTE(ferfischer @ Jul 6 2007, 10:37 AM) [snapback]319407[/snapback]
Thank you all so much for the support - I talked with Dr. DeLia this morning -and he feels we should do bedrest and boost drinks for a week and see how things go - in our case, our "recipient" twin appears normal without excessive fluid. I can't believe I'm saying this, but I actually would feel better if we were going to get the surgery because then I would be able to know I am helping them.

I will keep you all posted - thank you so much for all the information and positive vibes - we need it!

Jenny



Sounds like ours - when we were first diagnosed, baby b had no fluid but baby had a normal amount, not too much. Start drinking those boosts girl!

 

QUOTE(ferfischer @ Jul 6 2007, 10:37 AM) [snapback]319407[/snapback]
I can't believe I'm saying this, but I actually would feel better if we were going to get the surgery because then I would be able to know I am helping them.



I know what you mean - my husband and I felt like this after we were first diagnosed too. We were happy that our girls weren't so bad off that they needed the surgery, but sort of wished that we could do something as the waiting around to see if it got worse and the worry that it would get bad after it was too late to do anything was so hard. Now at 28+ weeks with the girls doing so well I am so happy that they didn't need it. Hopefully your experience will be the same.

 

Jenny, I am so sorry to hear this. Please take care of yourself and those little girls of yours. Keep us posted. You are in my thoughts and prayers. :hug99:

 

I don't have any advise but it sounds like you are getting some great ideas here. I will keep you in my thoughts, and wish you the best. xoxoxo

 

My girls were also diagnosed with TTTS. Echoing PPs, contact the TTTS Foundation. They will send you a huge packet of information. My girls TTTS was never bad enough to do anything about (fluid amounts were never greater than 8cm and less than 2cm), I did stop working and on the advice of Dr. DeLia drank Boost like there was no tomorrow; this was all at 16-18 weeks. By 24 weeks their fluid levels were evening out. Sadly, we lost Olvia at 30 weeks, but NOT from TTTS, no cause was found. At birth my OB said their fluid levels were in the high normal and low normal ranges.

So call one of the doctors, contact Mary at the TTTs Foundation, and drink Boost!!! Wishing you the best!! :hug99:

 

Keep in mind that just because you aren't doing the surgery right now doesn't mean you aren't doing anything. In fact, you are being very proactive about the care of you babies:

1. You are educating yourself through professional organizations and different physicians
2. You are asking for opinions from others who have experience with TTTS
3. You will be on bedrest
4. You will be drinking protein shakes

And these are just the main things you are already doing. You are a wonderful Mommy already to take such good care of your little ones.

We're hoping things turn around for you!

 

sounds like you are getting really great advice.... don't lose out hope...there have been so many great stories on here of babies beating those odds. And I know mom's personally whose fluid levels have been extremely low and seen them come back up....so they can vary. I do believe staying very well hydrated is also crucial... so you are doing a lot of work....drink your boost...rest...drink water.... and remember that you are just 6-7 weeks away from that magical gestational week... there have even been babies born at 21 weeks who have managed to make it...so don't lose hope...set those mini-goals and focus on that.

 

Hi,
We are having identical girls diagnosed at 13 weeks. Immediately called the ttts foundation started bedrest and boost. Prayed to make it to 16 weeks for the surgery. Made it to 16 weeks and needed to get worse to have the surgery to stretch my uterus etc. Anterior placenta blocking the way. Torn both ways. Glad we were staying stable but wanted to have the surgery to"cure it" . Been to the doctors weekly since the beginning for monitoring and have stayed stable. We too were devasted thinking we wouldn't have made it to 16 weeks and here we are at just over 30 weeks. We are too far for the surgery. We just wanted to make it to viability and we did. Now every week/day is just a blessing. Baby a is 3lbs 5 oz. Baby B is 2lbs 9oz. We have had our fluid levels go up and down and they have a 21% size difference. I notice if I don't drink my boost or rest like I should it makes a difference. Some weeks our dopplers are irregular or our fluid gets worse but the next week it seems better again. I've been having the best of care. My doctors are wonderful. Dr. Arrabal from Sinai- (Siobhan from parenting a Bakers Dozen's doctor. This man is amazing but we are in baltimore)We have been so fortunate. I would find out everything you can about ttts and do the bedrest and boost I've sworn it has made a difference. I just wanted to give you some hope. It is so devastating but in some cases you get stable for whatever reason and hopefully you will too.