Twin-to-Twin Transfusion Syndrome

Twin-to-Twin Transfusion Syndrome
or TTTS

There is Always Hope
TTTS is not fully understood by even the leading doctors in the field of TTTS research. Few doctors are actually current on the newest techniques for diagnosing and treating the disorder. This results in some not so accurate assessments of the babies chances of survival. Huge advances in the ability to analyze and diagnose TTTS have been made over the past couple of years. New laser techniques pioneered by Dr. Quintero (Tampa) and Dr. De Lia (Milwaukee) are showing amazing success when compared to more traditional methods of combating the disease. There are several programs around North America and Europe that are currently working hard to quantify the syndrome better so that a right and proper treatment plan can be prescribed. Until then patients may need to look a little harder to find the right course for them. There are new ways available today to improve your babies chances against TTTS. Today, more than ever, there is reason for hope.

Read Full Article Here

TTTS Foundation
The only non profit organization in the USA dedicated solely to TTTS
Provides support by e-mail and phone
Provides a comprehensive book on TTTS to newly diagnosed TTTS patients via the mail
Provides other support on a case by case basis.
Some information regarding TTTS

The Florida Institute for Fetal Diagnosis and Therapy
Institute dedicated to TTTS research and the exploration of corrective surgical procedures
Host of Dr. Rubén Quintero. Pioneer of one of the corrective surgical procedures for TTTS
Detailed information about TTTS from a general and a medical perspective
Message boards including one that is reviewed by Dr. Quintero and his staff
The most comprehensive collection of both leyman and medical information pertaining to TTTS available on the web.

Dr. Ramen Chmait
CHLA-USC-IMFH@CHA Hollywood Presbyterian Hospital
The Doctor's Tower
1300 N. Vermont Avenue Suite 706
Los Angeles, California 90027
323 671-6074
Mary E. Spatz RN
Fetal Therapy Coordinator
[email protected]
813 841-7218
website: OurBaby

Covenant Healthcare St. Joseph Regional Medical Center TTTS
Institute dedicated to TTTS research and the exploration of corrective surgical procedures
Host of Dr. Julian De Lia. Pioneer of one of the corrective surgical procedures for TTTS
Some information regarding TTTS

Twin to Twin Transfusion Syndrome Awareness
Lots of various kinds of information regarding TTTS in a couple of different formats including Stories, newsletter, guest book and a map of TTTS specific treatment centers.
Links to related issues like loss and NICU

Twin Hope
Primarily a reference collection
Some information about TTTS
Lots of addresses and links

Twin2Twin
Association dedicated to research and treatment of TTTS in the United Kingdom
Detailed information about TTTS from a general and a medical perspective
Parental stories
Notes to Parents page gives a great run down of TTTS in layman’s terms

Some Doctors that specialize in TTTS Treatment (contacts as of 11/05)
Dr. Julian DeLia (laser surgeon)
The International Institute for the Treatment of Twin-to-Twin
Transfusion Syndrome http://www.covhealth.org/stellent/groups/p...ocuments/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 Fetal Therapy Program
Web site: http://www.fetalmd.com/ttts.htm
Telephone: (888 ) FETAL-77 (338-2577)
E-mail: [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

Timothy Crombleholme, M.D.
Fetal Care Center of Cincinnati:
Web site: http://www.cincinnatichildrens.org/svc/ prog/fetal-care/default.htm
E-mail: [email protected]
Telephone: (888 ) Fetal59 or (888 ) 338-2559
Mailing address:
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue
Cincinnati, OH 45229
For information on the Twin-Twin Transfusion Trial, visit:
http://www.fetalsurgery.chop.edu/tttxstd.shtml

The Fetal Treatment Program
Hasbro Children's Hospital
Women & Infants' Hospital
Brown Medical School
Web site: bms.brown.edu/pedisurg/Fe...tment.html
http://www.fetal-treatment.org
E-mail: [email protected]
Telephone: (401) 421-1939
Mailing address:
101 Dudley Street
Providence, RI 02903

 

My little boys had TTTS and are doing well, after being born at 30 weeks emergency c section

 

There's nothing here about the Acute TTTS. We've had it in labor, before the labor Baby A - the donor baby was even little havier than the recepient Baby B. As the result Sophia (A) is still in the NICU with failed kidneys and will most likely require the transplant in future.

 

Our boys were diagnosed with TTTS in late August 2003 at 20 weeks gestation. We found out b/c our OB-GYN told us there was something not quite right with our triple-screen, but not to worry. Often a woman carrying twins will have an odd result to this test. They sent us to the local hospital with 3 MFMs on staff who went over our test results with us and told us what it may mean. They then did an U/S and confirmed the results; stage II TTTS. They gave us a quick overview of the disease, told us of 3 options (let nature take it's course, serial amniocentesis, terminate one of the babies, or complete termination) and finally let us know that whatever decision was made, we had to do it quickly due to the fast progressive nature of the disease.

Since it was so much for my husband and I to digest, we requested the weekend to think about it and decide. We just felt it was impossible to find out about this new (to us) disease and make a decision about what to do about the little lives growing inside of me in the space of 2 hours. It was just too much. Over the weekend, I was glued to the internet; the more we found out about TTTS, the more frightened we became. We looked at the stats of both twins surviving the disease and even if both lived, the chances of neurological problems in one or both boys. We also came across the news regarding fetal laser occlusion surgery (FLOC) and two names kept popping up - Dr. DeLia and Dr. Quintero. I was also privilaged enough to talk by phone to parents whose girls had survived TTTS with flying colors. (They talked to me for over an hour from Florida while a horrible hurricane was brewing - thank you guys for taking the time!!!)

With as much information in hand as we could get in such a limited time, my DH and I opted for the surgery with Dr. DeLia. We visited our MFM Monday morning, told him what we wanted to do, and he was immediately on the phone with Dr. DeLia. We were very lucky that our MFMs gave us full support, and Wednesday morning we drove from our home in NE Ohio to Milwaukee, WI.

We met with Dr. DeLia and his staff and found out just how passionate both he and his staff are about curing TTTS. Everyone there is so kind and generous; words just cannot express how grateful we were to be there. The surgery was performed Thursday morning and Dr. DeLia told us it was successful. The only thing now was to watch and wait - we had to make sure that I wouldn't go into pre-term labor and verify that all the vessels that needed to be closed had been. Over the next three days, things progressed beautifully. We could see day by day the donor twin's sack getting more fluid. We watched as he got the first signs of bladder and kidney function. We watched as the recipient baby's heart got healthier. We were overjoyed.

My DH and I went home the Tuesday following the surgery with new hope. The surgery went better than we could have hoped. I was placed on strict bedrest and drank Boost 3 times a day. We stayed in close contact with Dr. DeLia and our MFMs who monitered the babies weekly said they looked like new children.

Approximately a month later we found out an all new reason it was doubly important for me to keep my feet up. I was diagnosed with vesa previa (a vessel laying across the top of the cervix) and quite a large one. This meant if I were to go into labor, the vessel would burst and one or both babies would bleed out in a matter of minutes. There more than likely wouldn't even be time to perform and emergency C-section if that happened. So now my MFMs would monitor me even more closely. It was a delicate balance of keeping them inside me long enough to be born healthy and not letting them go too long to where the vessel would burst. I can't possibly thank my MFMs enough for the care they gave us the entire time I was with them, but especially during this time.

After the vesa previa was found, we knew we'd be having the babies by planned C-section, and finally the date was set; December 6, 2004, a full month before their due date. The morning came and I was more nervous than I had been the entire pregnancy. At least during the pregnancy I could be proactive. I could do research, I could take steps to ensure the babies would be born healthy. Now it was time to see if everything would truly be alright. Ryan was born at 7:25 am, 3 lbs. 12 oz and Alec was born at 7:26 am, 3 lbs 14 oz. We got to see our babies for a moment before they were cleaned off and taken to NICU.

Here I'll cut the story short. They did wonderfully in NICU, only spending one day on a respirator, 1 week on CPAP, and came home to join their big sister New Year's Eve. We're extremely blessed that with such a difficult pregnancy everything turned out 100% fine. Our boys will be 2 in December and are normal, rambunctious boys. Our entire family is very, very blessed.

 

I'm looking for more info on acute TTTS actually. 26w1dy with id girls dd 6/2. No signs of TTTS 2 weeks ago, we'll have another check on Tuesday. I am however, researching delivery options and I've heard stories of acute TTTS but then that there's no risk to delivering twins vaginally. I'm seeing doctors this week and will ask them but was wanting to get some experience of other twin moms. Thanks.

Becky

 

Acute TTTS is something that is rare even among pregnancies where TTTSs was obviosly a factor. You do not need to worry about it. There is additional risk associated with Twin delivery under the best of conditions. If you use a full term singleton as a baseline then everything else is additional risk.

Acute TTTS can be a problem, but if your doctors are aware that the babies being delivered might be identical twins then they will be on the look out for Acute TTTS. The resolution is an emergency c-section of the second baby and then blood transfussions.

Not to be a party pooper, but unless you are monoamniotic or have seen reverse blood flow on U/S dopplers then you cannot know for certain that it is one placenta as opposed to a fused placenta. Even a post delivery biopsy will frequently mistake the two. Except under the conditions above, you can only guess that they are ID twins without a DNA test. Of course you can do a DNA test on the amniotic fluid, but that is only done when they really suspect genetic problems since sticking a needle into the sac introduces rupture and infection risk.

With that said, having twins is risky and there are things to think about or do. Adding things to that list of worries unnecessarily can increase your stress level which is also not good for the baby and can add risk. Try to relax, keep your eyes open for unusual things and react when they happen.

 

Acute TTTS is NOT any more rare than chronic. Chronic TTTS is diagnosed before 26 weeks gestation, Acute is anything that occurs AFTER 26 weeks gestation, even if the pregnancy continues to close to term.

Most doctors do not encourage a septostomy as there is a risk of a complete tear through the amniotic membrane and a subsequent mo/mo pregnancy. However, when septostomies are done they are performed by either puncturing or lasering multiple holes in the membrane that will hopefully avoid this situation.

The external indicators of TTTS include not only the larger than normal uterus and decreased movement of the donor; it also includes hand and leg edema, sudden increase in abdominal girth, pain, and a rapid weight gain for mother, and uterine contractions.

It is entirely possible to identify a monochorionic pregnancy in utero by looking at several signs: the connection of the amniotic sac to the placenta will be a T shape instead of an A shape that occurs in a fused placenta; the membrane is VERY thin compared to a fraternal pregnancy; both of these signs with the confirmed same sex twins and single placenta can accurately diagnose identical twins.

Since acute TTTS happens in literally seconds during delivery and has a high rate of neurological damage and kidney failure, the safest route of delivery is a c-section for monochorionic pregnancies. By the time you can have an emergency c-section it could already be too late. Plus, it takes time to get blood from the blood bank, even if it's in the hospital, so it is likely that the transfusion will be quite delayed. They have to test the baby for typing of its blood, then order the blood, have it prepared, sent to the NICU, checked by two nurses for assurance it is proper to be transfused and then have it transfused over at least an hour, usually 4 hours.

When dealing with TTTS, please be sure to research it with the experts who deal with it medically to make sure you have correct information. Your babies lives depend on it.

For information, please visit www.tttsfoundation.org or www.fetalhope.org.

 

Thank you, everyone, for your replies in this thread.

Please check out a similar article on TTTS, in our new Twin Wiki forum: Click here. If you'd like to comment, please click here to get to the discussion topic for the TTTS wiki article.

 

Hi, I'm a mom of 24 weekers ttts survivors. I also have a total of three sets of twins. 2 sets are identical and I have to say, now that I know about ttts, I would only deliver mo/di twins by c-section because of the great potential of acute ttts happening during birth. This problem is not well understood or even recognized amongst the medical communities yet but it is very real to the parents that ARE afflicted. In my opinion, doctors should perform weekly ultrasounds on mo/di twins and delivery those twins by cesarean....

 

We've had 2 experiences w/ TTTS. We lost our boys. Our girls had acute ttts and are healthy now. MOre and more studies suggest ID twins should be delivered BEFORE 36 wks to avoid acute ttts and possible fetal death. in hindsight a c-section might have prevented acute ttts. but i had a rather smooth induced labor and delivery at 34w6d. just shocked when 1 was red, other white. both required transfusions. very healthy now.

 

HERE is a news story about a new kind of specialized surgery for babies while still in the womb. Here is the intro to the article:

"A Utah hospital has become one of only 15 centers in the country to offer a new kind of team-based surgery to save babies while they're still in the womb. The specialized care was announced today at St. Mark's Hospital in Salt Lake."

It is amazing how far science has come and what the Drs can do these days!! And I also thought it was cool that it is so close to "home" for me being right here in UT!

 

This post is in response to missmomoftwins02. Just this last week on 3/18/08 DH and I went in to my regular OB to have what we thought would be a routine ultrasound for our twins. This was the "big" 20 week one. As the ultrasound progressed there were some considerable size differences between the two babies and one twin had almost no fluid in her sac. Immediately my doctor refferred me to a next day appointment in the Perinatology department at McKay Dee Hospital in Ogden, Utah.....about 15 minutes from her office.

After we arrived and the ultrasound tech began, within seconds she told us that this looked like a classic case of TTTS. I had been in to my regular OB just 3 weeks previous and everything was completely normal at this point so this had all happened very quickly. The bladder of the donor baby at this point was so small it was just a sliver on the screen and almost not noticeable while just the day before we could still see the bladder even though it was very small. It seemed it was progressing quickly. The doctor who saw us after the ultrasound said it was a severe (level 3) case and told us if we wanted to save the babies we needed to act quickly. He mentioned laser surgery. He told us that there was a doctor at St. Marks here in S.L.C., Utah (only about an hour from our home) but that this doctor had only preformed a few surgeries and the success rates were not that great. He refferred us to Hollywood Presbyterian hospital in Los Angeles, CA and said if it had been his wife in this situation this is where he would want her to go.

Insurance was contacted immediately and we had approval within a matter of hours. Doctor Chmait (as mentioned in the post by TTTSDaddy) was the one we would be working with and they wanted us to fly out that night so we could be there for surgery in the morning. This doctor has preformed over 300 of these surgeries and we are extremely grateful that we chose to go to CA to have this done. When meeting with him in the morning we now found that the donor baby had no visible bladder on ultrasound and even less fluid than the day before, measuring something like 0.3. My surgery was going to be very techinically difficult as the placenta was attached to the ceiling of my uterus making it very difficult to get the laser and scope inside to preform the surgery.

The surgery went well and both babies had visible heart beats the following morning on ultrasound. Even the donor baby now had a very noticeable bladder which we were told by doctor Chmait was very unusual to see this much improvement less than 24 hours after surgery. Now we have a waiting period of 4 weeks to see how the babies are doing with weekly ultrsounds. I can even feel Baby B (the donor) kicking me all the time in the last 3 days whereas Baby A was the mover and Baby was very quiet because of loss of fluid and Stuck Baby Syndrome.

This was nothing less than a miracle and although it happened so fast I feel like we made the right choice and I am so glad that we chose to go elsewhere to have the surgery instead of staying close to home here in Utah. Dr. Chmait was professional, kind and caring and I felt confident in his abilities. The odds for our babies at this point now that the surgery was successfull is 94% one survivor, 73% two survivors. The doctor at McKay was quoting us something like 50/50 which was probably more accurate for those doctors working at St. Marks.

 

Hi,

Anybody know any ttts doctors I can go to in Los Angeles, ca??
I'm not sure if I have TTTS but I am scared to death that my babies might have it. I am 20 weeks and still don't know if I have fraternal twins for identical. All I know is that Baby A is 16 oz and Baby B is 6 oz. I can't stop thinking and crying everynight know what TTTS can harm my babies. I don't like my specialist because he is not giving me answers. All he said was that maybe I might have TTTS and Baby B might not make it later. He said he only see one placenta but might not see the other one. This is not good enough. I need answers and options where I can save my baby. He said he will see me in two weeks and see how it goes since he still see Baby B's bladder. I can't wait two weeks and see. what if my baby get worst. I need a doctor that know more of TTTS and will try to help make take actions and not wait and see. Please HELP!!!

Thank you.

 

Can someone please tell me....

Can mild TTTS develop at 21 weeks or so? Everything I've seen lists it based on gestation age.. severe before 18 weeks, chronic and mild after 24-26 weeks?

 

Hello - Could you recommend a good perinatal specialist for TTTS in San Francisco? I

Your help is much appreciated.

Chloe

 

QUOTE(chloe.jong @ Aug 14 2008, 01:49 PM) [snapback]930208[/snapback]
Hello - Could you recommend a good perinatal specialist for TTTS in San Francisco? I

Your help is much appreciated.

Chloe



Hi everyone, Im Jen, we went to our 20 week appointment hoping to see what our identical twins are. Well they were both curled up nice and snuggly. After the u/s we met with our Dr. he said that A is 9 oz and B is 12 oz, he said that the weight difference was more than he liked to see, I have to go back in 2 weeks to have them measured again. He mentioned possible twin to twin transfusion, which I had not read about until now. Three weeks ago B was a little smaller than A. Then he said if there is still a sizeable difference I would have to see a Perintoloy Dr at the local hospital. He mention the laser procedure and possibly having to remove some amniotic fluid from around A. So now that I get online and started reading and freaked myself out. My boyfriend said to wait the 2 weeks till the next appointment and see from there.

 

Thanks for all the information. I am 21 weeks with identical twin boys and was just diagnosed today with TTTS. I was told that I am in Stage 1/Stage II. I had an amniotic fluid reduction today and will go back on Thursday. Depending on what they see on Thursday, I will either have another fluid reduction or be referred to Cincinnati for surgery.
bkwg333
Nashville, TN

 

We had TTTS and my twin got all most of the blood and I hardly got any.. this is why i got my cerebral palsy.
it was really interesting to read!

 

I just want to add my name to this list in case anyone wants to message me looking for support or encouragement.

A little history:
@ about 10 weeks - had first u/s showing our twins were mono/di, looked healthy then. . . told by ob-gyn that he treated twin pregnancies same as singletons (that's a red flag) and that we wouldn't have another u/s until closer to 20 weeks. I worried and did research.
@ about 20 weeks - found out we had two little boys and that their was at least 20% difference in their sizes. Referred to MFM specialists.
@ about 21 weeks - MFM found that Baby A had < 2 cm "deep pockets" in amnio sac. Baby had within normal range. My cervix was funneling and dilated to 0.9 cm, and I was having painless contrax. I was immediately admitted to hospital on strict bedrest and had an emergency cerclage that week. I was sent home on strict bedrest after a successful, risky cerclage. I followed orders. Also, I had gestational diabetes, and after a few weeks of having difficulty gaining weight (while also doing the protein therapy diet), I spoke with Dr. DeLia and he pointed me to research about maternal malnutrition and symptoms of TTTS which can be found on the TTTS Foundation's website, I believe. I stopped worrying so much about my gest. diabetes diet, and it helped, I believe.
@ about 25 weeks, Baby A (Donor)'s deep amnio pockets had increased to within normal range, but Baby B (Recipient)'s amnio pockets showed polyhydramnios. . . Above normal range. Recipient's heart was monitored by a Fetal Cardiologist from University of NC, Chapel Hill. Some thickening was shown in heart. We were having u/s at least once a week. At one point, size difference wasn't as spread.
@ 27 weeks, I was admitted to the hospital to stay for the remainder of my pregnancy on bedrest. I can't even begin to go into all the up's/down's from that experience here. When we were admitted, the doctor's were shocked we'd even made it to 27 weeks. . . It was that scary and iffy. But we remained Stage I TTTS the entire time somehow. I do not know. . . bedrest? protein diet? miracles. I did not have amnioreductions despite polyhydramnios and constant painless contrax. I had the steroid shots to help the babies' lungs as a precaution. We were monitored very closely, and I left my bed only to take a 5 minute shower every few days, go to the MFM or Fetal Cardio once every week, and only twice did I go outside for fresh air in a wheelchair. . . my nurses made me do it.
@ 34w1d, my guys were born vaginally in the OR after Baby A's water broke. Baby A/Donor was 5 lbs., Baby B/Recipient was a hefty 6 lbs. 12 oz. at 34w1d! The donor was pale, the recipient was very red/purple. Both guys did great but were still admitted to the NICU. . . Only one had an IV for about 24 hours. Both breathed on their own. Donor did 2 weeks in NICU. Recipient did 1 week in NICU. They had formula the first few days, but then I was able to give them breastmilk. . . after about a month and a half, both were able to nurse from the breast with no EBM.

At about 6 months, they are both doing great. Donor is still smaller. . . 10th percentile without adjusting his age - which I think is pretty darn good. He had a little trouble with muscle control with one of his eyes, but even that has resolved itself. He was born with hypospadias which will be treated in the next month. Recipient is 75th percentile without adjusting his age. Developmentally, I can tell they are a little slower to reach some of the milestones, but not that slow. Both were rolling over by 4 months, smiles were just a couple of weeks off from babies born at the same time full term, and of course, breastfeeding was notably more difficult than with my fullterm singletons.

But I'm just so thankful they made it, and I remember the anxieties and fears that plagued our pregnancy. I don't know why we were some of the lucky ones. . . It hurts me deeply to think of the babies who don't make it. I am thankful for the doctors and scientists who are trying to move forward in understanding this disease.

December 7 is World TTTS Awareness Day. Spread the word.

Again, please feel free to contact me.

 

Hello everyone... just got diagnosed with Stage 1 TTTS this past Wed at 19w3d.... doc could see a bladder on u/s and baby was moving around a lot... but smaller baby was 8oz and bigger baby was 12 oz... doc will see me weekly from here on out he said... am pretty nervous because I've been reading aobut it since the beginning esp after finding out the twins were mono/di at 13 weeks... sharing a placenta... they were doing ok until this past ultrasound... now it is obvious that one baby has A LOT more amniotic fluid than the other... he didn't say they were having any probs yet... just said he needed to see me weekly.. not sure what to think... can feel little baby moving around.... so trying not to worry too much... please keep me and my girls in ur prayers... thanks... will update after appt Wed...

 

My story begins in 1997 when I was pregnant; 12 weeks along my doctor said I was having a miscarriage because I was bleeding so to lay flat and prop my legs up. I did this for a week and still had not gone through a miscarriage so I went back to the doctors, they did an ultrasound and said I was having twins. From there I was sent to a specialist the next the day, he turned out to be the best doctor I could ever ask for. He performed another ultrasound on me and said my pregnancy was what was called a Twin-To-Twin Transfusion and that one of the babies were getting more of everything than the other baby and that one of the babies were actually being crushed!! I was so scared. He said I only had two choices:
1. To let the baby being crushed just die and absorb into the placenta like he was never there, but his heart beat was really good still at that time.
2. To come back the next day and he would perform an amniosentisos (sp) to drain fluid off of the baby who's sac was full and that would give the other baby room to move and have a chance to get more fluid into his sac. If I went with option 2 I was then taking the chance of losing both babies. I would not be able to move around much either for a while.

This was so scary going from thinking I was having a miscarriage to now having twins but I may lose one or both of them. There was only one answer for me however and that was I wanted both babies so I was going to have the procedure done the following day. I went back the next morning New Years Eve and it was amazing to watch the whole thing being done on the ultrasound machine, as soon as the fluid was coming out of the one sac you could see the baby that was being crushed for days just going crazy inside of me, moving all over the place. I went home after words and did nothing but sit home with my father who and watched all the New Years Eve excitement on T.V. until later in the evening the phone rang and I went to hand the phone to my father when I felt a huge gush of fluid. I got up and ran to the rest room and was so scared I thought this is it I'm going to lose them both. I changed my clothes put on a pad and went back to the couch and called my doctor. He told me it did not sound good but to just lay there and do not get up for anything other than to use the restroom. I was fine the rest of the night but I woke in the morning with my pad soaked. I was crying and crying I was so upset and called the doctor back. He put me in the hospital and I was told I would probably be in there the rest of my pregnancy but I only ended up there for 8 days with ultrasounds daily they said I was good enough to go home for the rest of my pregnancy. I had no other problems and carried the boys until I was 34 1/2 weeks. They weighed 6 pound 9 ounces and 5 pounds 9 ounces. I was very blessed and I hope this story can give someone who may of just found out that they have TTTS some hope.

Sincerely, jpoirier

 

QUOTE(Dragonfly76 @ Mar 14 2006, 09:37 AM) [snapback]86353[/snapback]
There's nothing here about the Acute TTTS. We've had it in labor, before the labor Baby A - the donor baby was even little havier than the recepient Baby B. As the result Sophia (A) is still in the NICU with failed kidneys and will most likely require the transplant in future.


I am interested in what you are saying, but I a confused as to what you are saying. Will you please explain a bit more.
Thanks,
Kristy

 

I feel your pain and concern, I don't know of any Drs. in your area, but maybe it is time for you to get a second opinion out of state...see the 1st post from TTTS Daddy. He gives a list of good Drs. I just emailed on in FL and hope they get back to me tomorrow!
Kristy





QUOTE(firsttwin @ Jun 7 2008, 12:36 PM) [snapback]815273[/snapback]
Hi,

Anybody know any ttts doctors I can go to in Los Angeles, ca??
I'm not sure if I have TTTS but I am scared to death that my babies might have it. I am 20 weeks and still don't know if I have fraternal twins for identical. All I know is that Baby A is 16 oz and Baby B is 6 oz. I can't stop thinking and crying everynight know what TTTS can harm my babies. I don't like my specialist because he is not giving me answers. All he said was that maybe I might have TTTS and Baby B might not make it later. He said he only see one placenta but might not see the other one. This is not good enough. I need answers and options where I can save my baby. He said he will see me in two weeks and see how it goes since he still see Baby B's bladder. I can't wait two weeks and see. what if my baby get worst. I need a doctor that know more of TTTS and will try to help make take actions and not wait and see. Please HELP!!!

Thank you.

 

My name is Karen and I am the nurse coordinator for the Fetal Intervention Team at Texas Children’s Hospital in Houston. I have been a L&D high risk nurse for 30 years…(yikes! that’s a long time). I have a special interest in Complicated Twin pregnancies as well as TTTS.

We lose too many babies every year to this disorder! I am working very hard to educate as many moms and families as possible and to give them factual info instead anecdotal or hear say info.

Please do not hesitate to contact me with questions or concerns. :wub:

Karen Moise, RN
Fetal Intervention Coordinator
Texas Children's Fetal Center
Baylor Clinic Bld 14D.93
6620 Main Street
Houston, Tx 77030

Tel: 713-798-8621
Fax: 713-798-2810
Toll Free 1-877-FetalRx (338-2579)

Answering Service: 713-798-7500

Karen Moise's blog:
http://miraclesofmultiples.blogspot.com/


We offer Hope……..

Twins, Two is better than one!
(If you or someone you love is
having twins ask them how
many placentas they have,
if ONE, ask for a hi-risk consult
with a special maternal fetal
medicine physician)

 

Hi there - I wanted to add our story to this section.

At an ultrasound at 12 weeks, my OB did not detect a membrane, and although she was not concerned, I was. We made an appointment with a perinatologist in our area, and at the appointment I was 14 weeks pregnant. We found out that our twins were sweet little boys, they shared a placenta, and were suffering from TTTS. We had weekly appointments from there after, and had an echocardiogram as well. At 18 weeks our ultrasound showed that our twins were not doing well. Our recipient (Jacob) had an enlarged heart, and our donor (Boden) had very poor blood flow, nearly no fluid, and we had yet to see his bladder on ultrasound. We had to make a quick decision and flew to Cincinnati 2 days later. We went through a day of testing on Monday, and met with the team of doctors that afternoon. We decided to have laser ablation surgery the next day.

They separate 13 blood vessels, and we did not know it at the time, but also did a microseptostomy. I was awake for the procedure and it was amazing to see my boys on the camera. We were also given photos taken by the camera attached to the laser. They also removed a liter of fluid from Jacob's sac.

The surgery went very well, and we flew home 3 days later.

At an ultrasound the following week our ultrasound tech and doctors were very confused because it appeared that Boden had suddenly gotten bigger than Jacob. After some searching they found that the membrane had torn and was floating freely, only attached at one side. The boys' cords were already tangled.

I was admitted to the hospital at 24 weeks for monitoring, and we met with neonatologists several times. Between our 2 MFM docs and the neos, we decided to deliver at 32 weeks to try to prevent a cord accident from occurring after that point.

I delivered Jacob and Boden via c-section at 31 weeks, 6 days. Prior to delivery I had been having contractions for about 4 weeks, taking Terbutaline as well as 2 pills to keep them under control.

Jacob was 4 pounds 2 ounces and Boden was 3 pounds 8 ounces. They did very well in the ICN. Jacob was discharged after 5 weeks 6 days, and Boden after 6 weeks 4 days.

They are both doing amazing today, and are the happiest little guys I could have imagined.