Twin-to-twin transfusion

Sharon - posted on 05/08/2009 ( 11 moms have responded )

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I was wondering if there are any parents on the site whose twins were diagnosed with TTTS (twin to twin transfusion). My identical twin boys were diagnosed near the end of my pregnancy and it was a very scary ordeal. I am happy to say that after a great dr. and the right treatment , they are healthy 16 yr. old boys now.

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Sinead - posted on 05/20/2009

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Hi, I have 16 month old ID girls and we were diagnosed with acute TTTS at 34 weeks. I was closely monitored and schanned every week from wk 5 and displayed NO symptons at any stage. At 34 weeks were were told and I have my girls 20 minutes later. We were told in no uncertain terms that they literally had only hours to live. Our donar twin had not grown since 28 weeks. They are fine now, although there is a weight difference and slight facial shape difference. My smaller twin is not yet walking, so I am slightly concerned there.

Lisa - posted on 05/20/2009

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Just read over the other responses to this question...I too did the ensure shakes/bedrest and consulted with Dr. Delia on the phone. He was a blessing as well as the support of the TTTS Foundation website.

Lisa - posted on 05/20/2009

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We were diagnosed with TTTS at 22 weeks. Scary doesn't even begin to describe the experience. I was on bedrest for 9 weeks, was put on a high protein diet, and given steroid shots to boost the girls' lung development. We delivered at 31 weeks via emergency C-section. They were in the NICU for 39 days. The girls recently celebrated their 2nd birthday and are doing WONDERFUL! We were truly blessed that they survived and are doing great!

Tracie - posted on 05/19/2009

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kristie, i am so sorry about your baby:( was the lose of precious baby B due to the TTTS? i can't even imagain how you feel and are dealing with everything. our whole experience with this definitly tested our faith, our weekly drives to philly for ultrasounds was the longest drive of our lives. the unknown...yuck! it was a waiting game, every week! and there was nothing anybody could do but wait and see what developed week to week. i also there is nothing anybody can say to make you feel better but please know that GOD is holding your baby in his arms:) take care and just hold on to that baby A and give extra hugs:)

Tracie - posted on 05/19/2009

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hey sharon, sorry it took me so long to respond. the reason for the shakes and horizontal bed rest is so the babies get as many calories from the shake as possible and i use as little as possible. i had to drink it threw a straw and slow. i wish more people knew about dr. delea and the studies he has done. i STRONGLY believe that if we would not have found him my babies would not be here!! all of my doctors said that the protien & bed rest wouldn't hurt but they didn't think it would do anything to help it. we didn't want to have any regrets so we thought... might as well! after one week the "donor" baby started to do better, and every week after that stunned the doctors! my boys had one placenta one sac but were seperated by a membrane, which is why the fluid was so lop-sided. "donor" baby was pretty much shrink wrapped on his half and "receipient" baby was living the life...stretching out, doing flips:) i think thats why "donor" never stops moving!!lol

Aimee - posted on 05/15/2009

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Didn't see there were any responses before I put out my message on the topic! I did fly to WI and see Dr. DeLea and his asst. surgeon. I was a vegetarian at the time and drank 3 Ensure drinks per day and 2 iron pills and special prenatal vitamins (from memory). Bedrest the last 1 1/2 mos. but my primary doctors didn't explain WHY so I would have done bedrest earlier. It wasn't for me - laying flat give the babies more air somehow.

If anyone is pregnant with TTTS, get the huge packet from that organization immediately and read it! There are too many uneducated OBs on TTTS and once you are educated it will help make the right decisions!



One specialist that I quit seeing told me all my options but recommended offering abortion or tying one off so the other had a better chance. No way for us! Having a doctor not tell you your condition (above person) should be illegal as the biggest part of survival for the babies is getting the proper nutrition and medical care! I have the same attitude with IEPs, the school should know proper ways to eduate my child but I'm going to make sure I know my child's rights and what's available...I've found access to about $2500/year for my son who is delayed and wouldn't have if I would have just left him in the system (and I've only just started looking.)

Aimee - posted on 05/15/2009

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Me, Sharon. Even went to one of the two surgeons in the world eight years ago to see if he was going to operate prenatally - they now can sever some of the veins/arteries to try to even out the nutrition/oxygen but it is risky and they only do it as a last resort.

Mine lived through it and one is delayed (obviously the one that got less oxygen). Hopefully he'll recover and catch up by 16.

Sharon - posted on 05/15/2009

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Kristie. I am so sorry to hear about u losing one of your sweet babies. At the time when I gave birth there did not seem to as much info on TTTS, but I know how lucky we are to have 2 healthy boys. I can not imagine the pain u are going through and I hope "baby a" is doing well. You did everything you could possibly do so please don't blame yourself. I will say a special prayer for your sweet angel in heaven :)

Kristie - posted on 05/14/2009

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Hi Sharon I was diagnosed with TTTS in December. I recently gave bith at 30 weeks but I did loose one of the babies 4 weeks prior to that. I went thru 2 amniotic reductions and when that wasnt working we traveled to Cincinatti Childrens Hospital to have fetal surgery. I was put on bed rest after the surgery and wasnt able to do anything. I did everything possible to try to save my babies. My babies were in seperate sacs but after the laser surgery it turned into one. The dr's said that Baby B died from the imbilical cords being tied into knots with eachother and that in turn cut off everything to my baby. I was told that I was very luck that Baby A made it. I was diagnosed when I was 19 weeks.

Sharon - posted on 05/08/2009

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I am floored to hear about the protein drinks!! If u don't mind me asking, what do they say the drinks help with? My boys were monochorionic (one sac, one cord) so our chance of TTTS was higher. I was very lucky that their symptoms did not develop until the end of my pregnancy and I was able to deliver them before losing one or both of them. My dr. actually did not even tell me at the time and I think I am thankful because I would have been even more of a nervous wreck. First boy was 6'4 and 2nd was 5'3. They were whisked away to another hospital by ambulance before I even got to hold them. The first born was the recipient and his bilirubin hit 24.5. We had to sign paperwork for him to have a complete blood transfusion if it hit 25 but thankfully it started coming down. The donor twin was extremely jaundice and anemic but both boys were home within a week and a half. I had my boys 16 yrs. ago and there was not much info then. I am just curious about new evidence because to this day, I still worry that they may have some ill effects in the future. I am so glad to hear that your babies are healthy. I can NOT imagine being diagnosed that early. Kudos to you for taking such great care of yourself and your babies!!

Tracie - posted on 05/08/2009

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my identical boys were diagnosed with TTTS during my 18th week. it was horable!! i am interested in what treatment you ended up doing. my boys are 7mths old and are very healthy! we did some research and found dr. delia, who has dedicated himself to figuring out what causes TTTS. he believes it starts with the mother...he has a web site, you should check it out! but he has found that drinking 3 high protien shakes(ensure or boost) a day and horizontal bed rest, reverses the TTTS. it allows the babies to receive as many calories as possible...and it works!! we were going to philly childrens hosp. weekly for ultrasounds and every week it got better and better. they are our miracle babies! prayer and protien:-)

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