By katef | Leave A Comment
Twin to Twin Transfusion Syndrome (TTTS) is a complication that affects identical twins (either in a twin pregnancy or as part of HOM) who share a monochorionic placenta. TTTS babies don’t share the placenta equally and blood is shunted from one baby to the other causing the donor baby to be small and often anaemic while the recipient baby deals with extra blood putting a strain on their heart and brain. A diagnosis of TTTS comes with a high risk of losing one or both babies, but this is our story of hope.
I knew something was wrong when I suddenly became huge over night. Then in the space of a few hours my stomach became rock hard and hot, my whole body ached and I began spotting. I’d been closely monitored for TTTS with ultrasounds and up until then everything had been perfect… up until that day, at 25 weeks pregnant, when I hobbled into the hospital to be diagnosed with acute TTTS and pre-term labour.
At 25 weeks the babies were too small to be delivered safely and with an anterior placenta we decided traveling to have laser surgery was too risky (the outcomes from laser surgery is much improved these days than back in 2003) so we opted for amnio-reduction.
They drained 2.5 litres of fluid from around the recipient twin, and I have never been so glad to be stuck with a giant needle in all my life! I was admitted to the hospital on bed rest and close observation, and began contemplating what this meant for the future of our babies. I knew that the odds of both of our babies surviving this were not good.
After the first episode things settled quickly. Now it was a waiting game… waiting to see how long we could last. Our aim was to make it to 32 weeks, but at 28 weeks things went bad again. Another round of amnio-reduction settled things, but the difference in size between the babies was becoming bigger and more worrisome.
Less than a week later, things began to go downhill rapidly. A scan showed changes in the ventricles (fluid filled spaces) of the recipient twin’s brain and the decision was made. The babies needed to be delivered, FAST.
At 29 weeks and 3 days gestation, our girls were born via c-section.
Izzy was the recipient twin, and she weighed 1013 grams.
Zoe was the donor twin, and she weighed 960 grams.
Both girls spent 6 weeks in NICU and 4 weeks in the special care unit. Then, five days before their due date, on my birthday, we took our girls home.
Today they are five years old, happy and healthy. You would never know how close we came to losing them. So many people who suffer from TTTS lose one or both of their babies.
Every day I look at my girls and wonder how I got to be so lucky.
For more information on TTTS please visit The Twin to Twin Transfusion Syndrome Foundation or TTTS Australia Inc
(photo – Zoe and Izzy, in hospital at 9 weeks old)
Kate writes about her crazy life at picklebums and dabbles in a bit of digital design and digi-scrapping over at lazy cow desisgns
ABOUT katef
Kate is chief cook and clothes washer at the Pickle Farm in 'almost rural' Victoria, Australia, as w{read more}
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My girls also developed TTTS, which necessitated an early delivery at 29 weeks via an emergency c-section due to complications. They weighed 2.7 (recipient) and 1.10 (donor), their brother was 2.10. The entire pregnancy and delivery was uncertain and quite scary. Thank you for sharing your story!
My sister lost twin baby girls to TTTS back in December of 1998. She was misdiagnosed by the doctor. At the time I actually found her problem by doing a search on google and there were only a handful of sites…one page in fact. I told my parents and they in turn shared the news with the doctor but by this time she was too far gone to get to Florida for the lifesaving surgery. They did the amnio reduction several times but that sent her into early labor. Doctors here in Oklahoma had not seen her problem before. Those precious babies came too early and literally died in her arms. Since then this very rare condition seems to have become so prevelant. She has even had friends that have had this condition but were able to save their twins with the surgery. You have been blessed. Thank you for sharing your story. Every time I see an article, blog, or news story about TTTS I long for my sweet nieces and wonder what they would be like at ten years of age.
our boys (part of a set of b/b/g triplets) are monochorionic and were diagnosed with ttts…thankfully late enough in the game to be less threatening. i was already in the hospital on strict bedrest and was monitored like crazy…numerous times a day. other than a giant increase in protein consumption, i required no other intervention. it was still very scary since i’d read how quickly things can change with ttts, and they had issues that lasted well into their nicu stays (the recipient had the most problem with kidney over-function and outrageous hematocrit levels. i’m so thankful that doctors now know much more about this very dangerous syndrome.
vickie…i am so sorry for your sister’s losses. i simply cannot imagine the grief of losing both of her babies.
Vicki – I am so sorry for your loss, my heart breaks for everyone who has been through this scary thing and especially those who have lost their babies.
To this day I am so thankful for our wonderful OB – he spoke about TTTS from the start and I knew what the signs and symptoms were. If I hadn’t have known and hadn’t have done anything when things first went wrong, we would likely have lost one or both of our girls. It happened so fast for us that even waiting another 8 hours and things would have been tragic.
I still hear today of people who didn’t know anything about the risk of TTTS and who lost their babies because they didn’t know what was happening and didn’t seek help, or their Dr took longer to diagnose it and refer them to a specialist… it breaks my heart and makes me realise just how incredibly lucky we were.
Thankfully the awareness, diagnosis and treatment of TTTS has improved immensely in the past 5 years. When I was first diagnosed I couldn’t find a single story online where both babies survived… now there are many wonderful stories of hope and I hope our story can help others going through this.
I think it’s so great that you’re sharing your story, Kate. It’s good for people who might be out there searching for information to read a story with a happy ending. My best friend was diagnosed with TTTS at 20 weeks back in 2003. She had multiple amnio reductions before sadly losing the donor twin at 26 weeks. The recipient twin was born at 28 weeks and is thankfully now a very healthy happy 5 year old.
I also had that condition, also born at 28 weeks. My girl was a tiny two pounds, my boy a whopping 4. I was on hospital bed rest from week 16 on. I remember my daily sonograms, and seeing how T was just barely hanging on. When born, both were so sick. T was anemic and J was just suffering all over. After 3 months in NICU, they came home. Now they are healthy happy four year olds.
I just lost both of my little boys to TTTS. I knew very early on that I was having complications with my pregnancy. I was told that I wasnt pregnant with twins eventhough I was always extremly big for my gestation. I pressed the issue before they finally looked and indeed found another heart beat. We did some ultasounds and found out that I was having twin boys and they were active ones. I loved watching them on ultasound yawn and move themselves around. I even have an ultasound picture where they are taking turns pressing their lips up to eachothers forehead. My husband and I were excited and overwhelmed. I still had a gutt feeling that something was not right. I was getting extremly hungry and then it just felt like the food that I had just eaten was gone in a matter of minutes and I was weak. A week later I was going to the bathroom and I began to notice blood in my urine and I took myself straight to the hospital. They looked at me and the boys and told me that everything was fine. I didnt buy it. I continued to have blood in my urine and I continued to take myself to the hospital. Everytime I heard the same thing. They said that everything was fine and that I needed to calm down and they thought that it was a kidney stone. My doctor even quit coming to dismiss me from the hospital. It was terrible. I was doing this every week just begging for someone to listen, but nobody ever did. This went on for weeks. At 22 weeks I went in for a random screening to check on the boys when I found out that I had TTTS. I not only had TTTS but it was very severe. They sent me to Florida where we attemted to save their lives and they did they best they could do. My doctors that did the laser just kept asking,” had my doctors seen any of the signs before?” All I could say was I told them and they would not listen. I got to see their little bodies during the surgery and I knew that I was doing everything that I could. I felt their little kicks and I was happy to feel them there with me, but the next morning we got up to some very heart aching news that Benjamin(donor) had passed away. I was determined to stay strong and my husband ( which is a wonderful man) was heartbroken. All we could do was wait and see how Joseph( recipient) would pull through. While on the way home from Tampa that afternoon I got this huge feeling that Joseph had not made it either. I called the doctors office the next morning and made an appointment to come in for an ultasound. I asked them to turn off all of the monitors and for them to take a look and it was confirmed by the doctor that Joseph had not made it either. I was heartbroken. This was my first pregnancy and I was told that I would never have children based on the fact that my apendix ruptured when I was younger and they were afraid that I would never ovulate. I was suprised and I had expected to be the best mother I could be for my little boys. It was so very sad and always will be because I knew and I had no help. Since then, I have decided to go back to medical school and become a obgyn and really make a difference. I cant sit back and watch this keep happening to people. I may not be a fetal specialist, but I want to be one of the people responsible for getting these babies here safely. I am 25 and this has just become a reality that this is something that I have to do for all of us that have gone through this. Mommys need somebody too. Mother and child have to go through this together. Nobody loves or knows your children like you do and we all want a doctor that will listen. Please pray that I become just that with the help of God ,and Him only, I can help to get these babies and mommys to a safe place together. God Bless, You are all in my prayers/ Stephanie