Student searching for answers-TTTS

Hello. My name is Kelly and I am writing a ten-page research paper for my tenth grade biology class. My topic is TTTS. I chose this topic because I am very interested in health-especially pregnancy and abnormalities.
I come to you in search for an insiders view of this terrible disease. If you could share your stories (and information) with me, I would be most grateful.
Kelly
ps-I am also on the lookout for ultrasound photos of TTTS twins.
KG

 

Hello. My name is Kelly and I am writing a ten-page research paper for my tenth grade biology class. My topic is TTTS. I chose this topic because I am very interested in health-especially pregnancy and abnormalities.
I come to you in search for an insiders view of this terrible disease. If you could share your stories (and information) with me, I would be most grateful.
Kelly
ps-I am also on the lookout for ultrasound photos of TTTS twins.
KG

 

Hi Kelly - My twins are survivors of TTTS. They turn 1 on Thurs. I would be willing to help with info. if you like. You can email me at [email protected] Hope your paper is coming along.

I am also a teacher, so that may help also

Sarah

 

Hi Kelly,
I have linked this to our Expecting forum, in the hopes that you may get more replies.

Good luck on your paper.

 

Kelly, below is our story. We were diagnosed at 19 weeks, had 2 amnioreductions, and ended up making it all the way to 35.3 weeks.

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Our girls were diagnosed at our first u/s at 19 weeks. We were lucky enough to find out that we were having twins that day and then the peri let us know there was a problem. Sierra (the donor twin) was already measuring smaller than Ainsley (the recipient twin) and Ainsley had a lot of excess fluid. Sierra's bladder was still visible at that time even though her amniotic fluid levels were low so we were still in Stage 1. The peri had us stay at the hospital and get an amniotic reduction that afternoon. She also became our main doctor and we didn't see a regular OB after that.

I don't remember the exact numbers but they removed about 3 large jars of fluid from Ainsley's sac on that day. I went home and rested and we had ultrasounds every Thursday from then on. They checked the girls' fluid levels, looked for Sierra's bladder, and checked the blood flow in their cords. Every other week, they'd measure them.

I did a very modified bedrest where I spent much of the day on the couch either sitting or laying down and I ate like a crazy person. Since Sierra was so small (she was the donor twin and also had a 2-vessel umblical cord) I wanted to make sure she was getting everything she needed. I had a checklist of certain types of food to eat every day and then I also sipped 1-2 Boost/Ensure drinks. I weighed myself every morning so I would be able to recognize if I had any large jump in weight since that is a sign of abnormal fluid production.

We made it to 25 weeks before needing another amniotic reduction. As happens in TTTS, the fluid levels changed very suddenly from one week to the next. This time they took about 4 jars of fluid out and I spent the night in labor/delivery in case I started contractions. Just to show how uncommon TTTS was even at a big teaching hospital (we were at Stanford University Medical in California), my room was packed with residents and interns who wanted to see the amnioreduction. They gave me steroid shots before the procedure just in case it caused me to deliver since the girls were viable now.

My peri kept an eye on our situation in case we needed to get the laser surgery but we passed by the window of time they give it without needing it. The amnioreductions worked well for the girls. Sierra was always smaller than Ainsley but didn't stop growing entirely until 35 weeks. That was 5 weeks farther than the peri's most optimistic estimate in the beginning. Sierra also always had a little bit of a bladder, which was important.

Sierra was tiny when she was born but was healthy and only had to stay in the Special Care Nursery for 7 days until she proved she could drink and grow consistently. Ainsley was a typical recipient twin and her lungs weren't matured fully when she was born. She was on a ventilator in the NICU for 4 days and then weaned to room air. She got out after 9 days.

We had excellent care and were blessed to end up with a doctor who knew all about TTTS, the signs and the treatments. We have one of the happiest TTTS stories I've heard. Most children who are diagnosed so early don't do as well as our girls did and I think that's because of the level of care and information we received. The girls are 3.5 years old now and, except for the 3 lb weight difference, you'd never know they had a difficult start to life. From the moment they were released from the hospital, they were healthy babies.

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I'm sorry I don't have any u/s photos of the girls together. By the time we found out there were two babies at 19 weeks, they were too big to get both on the u/s screen at the same time. Good luck with your paper!

 

Actually I do have one photo where you can kind of see both of them.

http://homepage.mac.com/noss_galen/eBay/Tw...f/0306both1.jpg

edited to change embedded pic to link

 

I had my twins girls 6 months ago and they did not really develop TTTS until about week 27 and when it hit it was crazy!!! Totally downhill from that point on and I was having a great pregnancy up to this point. Anyhow, my girls fought for there lives we had no idea how severe it was going to be. They held out until almost 31 wks. but they had to take them because the donor twin was NOT thriving anymore. The peri said it would have been days and one or both would have died. Anyway, they went through **** you're welcome to email me at [email protected] for further questions.
On the bright side they are doing awesome and keeping up with there milestones!

 

I guess I didn't see this thread when it was first posted. My story can be found under "Our Stories" in the Parental Grief forum. I'll have to see if I have any ultrasound pictures I can share.

 

Here are my girls at 13 weeks. I can tell a difference in their head size even then...I think they only measured 3 days apart at that point, and we were told that is normal.
http://i1.tinypic.com/4821c9z.jpg

The rest of these are at 20 weeks. We had obvious signs of TTTS, but were told everything was fine. Most are in 3d, so probably not the best for seeing fluid, etc. Here is Caylia...she was the recipient and obviously had a lot of room, because of the extra fluid. You can't see her eyes in this one, but only because of the angle.
http://i12.tinypic.com/40nivxe.jpg

Caylia's "girl parts." Look at all the room she has to stretch her legs.
http://i12.tinypic.com/2rmujqd.jpg

Caylia again
http://i14.tinypic.com/2vdfogn.jpg

This is Molly, but you can hardly see her. The ultrasound couldn't get a decent picture the whole time, because she was quite "squished" already (the donor). What you're seeing is just part of her face on the right side.
http://i18.tinypic.com/48mr876.jpg

Molly
http://i10.tinypic.com/498a89d.jpg

I have a few other pictures (from earlier and later), but they would have to be scanned or something first. Let me know if you're interested.