TTTS- Twin to Twin Transfusion Syndrome

Kara - posted on 07/21/2009 ( 11 moms have responded )

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I was just wondering if anyone had expereiced this disease and how things are going for them now?

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Carol - posted on 03/01/2013

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My girls are now in thier teenage years (16) and had some health concerns that I was wondering if it was related to TTTS. The donor twin (smallest born) is having the following problems: bone/joint deformity requiring surgery, dwarf like features with feet (only size 2), height (4'8"), and continuous wart and cold sore out breaks requiring meds for life. The reciepiant twin has lots of nose bleeds, severe migranes and heavy bleeding with her monthly cycles with bad cramps. Any information shared would be greatly appreiciated.

Amanda - posted on 11/26/2010

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my twin girl had TTTS i had 4 drainage in totally where it was 2 litres of fluid of each time off of one of my babies i was on hospitalize until they were born 3 1/2 weeks they were born at 29 1/2 weeks weighing 3lbs 4oz and 3lbs 2oz they are now 21 months old and doing amazing they are right at development age and no problems they walk at 15 months old!!

Pam - posted on 10/28/2010

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I was diagnosed with TTTS on December 29, 2009 and was in surgery the next morning. It was something that happened so quickly. I went in for u/s on 12/16 and everything was great. Next visit on the 29th and I had severe TTTS. This was my first pregnancy and with twins so I figured all the pain I was in was "normal" for twins. Nope. Thank god I happen to be only 20 minutes from the leading specialist in the country for TTTS. My children survived. I actually made it to 37 weeks. My scheduled delivery date. Baby A (donor) was born at 4lbs 14oz and Baby B was born ay 5lbs 6oz. They both lost over 11% of their body weight at the hospital and I had to start supplementing with formula. They stopped breastfeeding after day 2 in the hospital. It was heartbreaking for me. The first 2 monts of their life was really hard. I felt like we were in and out of the hospital all the time for check ups. They were born with slight vsd and developed a SEVERE case of acid reflux. Today at 6 months they are as healthy as can be. The doctors that cared for me during my pregnancy saved these boys life and were the absolute best people I have ever met. If not for them my boys wouldn't be here.

Kayla - posted on 10/16/2010

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My boys had TTTS, they were delivered at 35 weeks. (I spent the last 5 weeks of my pregnancy in the hospital on complete bedrest so they could constantly watch the boys development. They were boren healthy and got to come home at 3 days old. The only thing that lingers from then is that there is still a two pound difference in their weights and about an inch in height. (They are 2 now.) My boys birth weights were 6lbs. 4 oz. & 4 lbs. 15 oz.

Carlyn - posted on 05/06/2010

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i had ultrsounds every 2 weeks and im 19 weeks now, at 18 weeks i had a scan and they noticed there was no heartbeat from the smaller baby, the smaller baby had less fluid surrounding it but the doctors said it shouldnt have been an issue, they rulled out TTTS and put it down to the placenta sharing and just one of those things, am having another scan next week to do proper check of smaller twin who passed away.

Kara - posted on 03/24/2010

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Carlyn, just make sure that when they do the ultrasounds that they are constantly checking the fluid level on both babies and to make sure they can see the membrane seperating them. In my experience with this disease and the research that I have done, the earlier it is found the more complications there can be, but if you and your doctors stay on top things the better it will turn out. There is a fabulous website, tttsfoundation.com, i believe and they have wonderful things on there about TTTS, or there is fetalhope.org. On the last one though the stories are heartbreaking and I am glad i didnt read them till after the babies were born. I wish you luck and my God bless you and your miracles, and I truely hope that everything turns out for the best for you!!!

Carlyn - posted on 03/21/2010

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i had a scan at 7 weeks and one was slightly smaller than the other and they think there may be a chance of getting TTTS but it is a waiting game to see if that twin catches up, i have also found that it is more common in identical twins because they share a placenta.

Kara - posted on 03/01/2010

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I know it is not very common, but we were diagnosed at 16 weeks with TTTS and had the ablation surgery at 17 weeks and at that time 3 liters of fluid was taken off of Camdan. Ean had virtually no fluid and there was no visible bladder at that time. The surgery did wonders but by that time I had already started contracting and had to travel 4 hours every week for fluid checks fetal growth and cervix checks. The babies were doing great, however at 23 weeks the TTTS had reversed and now Camdan was the donar and Ean was the rec. At that time they took 1 Liter of fluid off of Ean and at 24 weeks I was put in the hospital. Between all the other complications, like blood clots in the fluid, and A C seperation, infection in the amniotic fluid, continued contractions and everything else....I dont know how we made it. However Camdans fluid broke and they were born at 27 weeks. I just wanted to know if there were any lasting problems from the TTTS or if most of the problems were from prematurity or other associated problems!! Thanks everyone!! And Good luck and God bless your little miracles!!!

Andrea - posted on 01/30/2010

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My girls Sophie (A-recipient) and Olivia (B-donor) were born May 19th at 27 weeks, 4 days. We went for a routine ultrasound and ended up having an inutero-ecg. Sophie was in heart failure and her left ventricle had stopped beating. Olivia's heart was pumping very rapidly. The girls were delivered by emergency c-section that evening. Sophie weighed 2 lbs, 9 oz, and Olivia weighed 1 lb, 15 oz. They both spent 10 weeks in NICU at Kingston General Hospital. They both had 2 blood transfusions and both had staf infections. When they were released from hospital July 27th, Sophie weighed 5 pounds and Olivia 4 pounds, 3 ounces. They required bronchodilator and steroid medication for their breathing but other than that, they were quite healthy.

They are 8 months old now and are happy, and healthy girls weighing in at 14 and 13 pounds.

Bonnie - posted on 11/03/2009

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My identical twins were delivered by emergency csection at 35weeks due to twin to twin transfusion, a was 5lbs11oz and b was 4lbs7oz, A was full of fluid so he was the twin who got the extra, he was rushed off to sick kids hospital in toronto and spent three weeks there they ran every test possible, gave him antibiotics, they had to wait for the fluid to clear on its own, he didnt have anyother health issues, he is now completely fine and he is 3months now and is 10lbs12oz. His brother only needed minor help at birth, but was kept in the hospital of birth for the first week and a half of life, both hospitals wouldnt let them go home until they were eating a certain amount per feed, no tube feeds for 48 hours and kept thier weight up. B is 13.5lbs now and they are both fine.

Lisa - posted on 08/19/2009

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I have twin boys who are now 21months old. My oldest twin, Caden, had to a blood transfusion at birth because they believed that my other twin Connor, had taken some of his. They are healthy and Caden has had no problems.

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