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Twin-to-Twin Transfusion Syndrome


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#1 JakeandPeyton'sMommy

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Posted 28 January 2006 - 10:58 AM


My little boys had TTTS and are doing well, after being born at 30 weeks emergency c section Splitting Boy Twins
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Brook
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Born at 30w5d due to TTTS



#2 TTTSMiraclesMom

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Posted 21 March 2007 - 05:13 AM

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.
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#3 TTTS Daddy

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Posted 26 February 2007 - 09:43 AM

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.
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#4 TTTS Daddy

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Posted 11 March 2005 - 12:16 PM

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.

What is Twin-to-Twin Transfusion Syndrome?
Twin-to-Twin Transfusion Syndrome (TTTS) is a disease of the placenta. It affects only monozygotic ("identical") twins sharing a single placenta. Basically as the placenta develops the blood vessels form in a way that vessels from one umbilical cord connect up with vessels from the other. This causes a sort of short circuit between the babies. This can create a transfusion situation where one baby does not have an opportunity to process fluid coming to it because it immediately gets sent over to their sibling.

This situation forms during the first tri-mester, but as the babies assume more responsibility for pumping their own blood, the impact of that cross connection becomes more important. For this reason, symptoms typically start showing up in the second tri-mester.

Another way that TTTS shows up is at birth (acute TTTS). When the first baby is born, a significant pressure difference across the transfusion can occur. The unborn baby being under the pressure of the mothers abdominal muscles and the contractions, while the just born baby is only under air pressure. Blood will flow quickly to the born baby. If doctors are not careful this can kill one or both babies almost instantly. As it is, both babies will have problems with their blood cell counts and transfusions may be necessary along with other treatments. For this reason, any multiples pregnancy with a presumed shared placenta should be considered risky. Strong credence to a c-section should be given no matter what the parents desire for a natural birth are.

How is TTTS Identified?
Typically the first sign is a "Stuck" twin. This is caused by one baby not processing enough blood so as to make much, if any, amniotic fluid. The membrane separating the babies will shrink wrap the baby to the side of the sac. Doppler U/S can also detect uneven or unbalanced flow within the two cords. Other signs are a weight and/or size differential of 10%-20% between the twins. Often the belly can grow so quickly that you will measure 5 months one day and 9 months 4 days later.

When Does TTTS Strike?
TTTS can strike at any time during the pregnancy.

Typically a first trimester occurrence of Chronic TTTS is fatal, and there is nothing mother or medicine can do about it. No one has proven it yet, but it is suggested and stands to reason that there are probably lots of parents that never know there were twins growing in there before the baby passes on and begins to absorb back into the womb.

Second trimester Chronic TTTS is very problematic, because any invasion of the womb may trigger pre term labor that would be fatal at this point. The babies are too small to deliver and too big for reabsorption. Current procedures give these twins a fighting chance where little chances existed even just a few years ago.

Third trimester Chronic TTTS is perhaps the easiest to deal with. Here the babies are viable outside the womb so if things get too bad the option to deliver is real.

Internal Indicators
  • Same Sex Babies (must)
  • Single Placenta (not fused)
  • Size discordance (typically >15%)
  • Amniotic fluid measurement difference
    - less than 1 cm on donor
    - greater than 10 cm on recipient
  • Significant difference in cord Doppler readings
  • Hydrops in recipient (water forming in body tissue)
External Indicators
  • Larger then normal uterus for gestational age of twins
  • One baby is felt kicking while the other is not
What Can You Expect?
First of all I want to stress that because of different combinations of cross connecting and different sizes of those vessels that do cross connect, this disease can show up in a very wide number of ways. As there is little that can be done in the early stages of the pregnancy, I will try to focus more on second and third trimester cases.

It is not uncommon for a TTTS pregnancy to be mistaken for Monoamniotic (MoMo) early on if the donor baby is not receiving excess blood right from the beginning. The clue is that the donor will be "Stuck" to the wall of the womb and will move it's limbs little if at all during the U/S reading.

The U/S may also have difficulty in detecting the Donor's bladder, if TTTS has progressed far enough.

Each U/S visit should include a Doppler reading on the blood flow in the cords and other places. In the cords, they should measure and not the difference in flow and if possible how many vessels are functioning in each cord. This can give you an idea about placenta share and it can be a supporting clue in a TTTS diagnosis.

As TTTS progresses the Recipient may begin to experience a hardening of the heart. This is caused by 2 factors. The amount of blood being processed, since it is getting its own supply plus some of its siblings. The other being the thickness of the blood. This hardening of the heart can progress to a point where heart failure occurs. Should TTTS be corrected by any method, such as amnio drains, surgery or birth, the heart will typically correct itself as it grows.

As heart failure begins, water drops, called hydrops, will form in the recipients body tissue. This will typically proceed the demise of the baby by only a couple of days if that much.

Anemia is the biggest problem for the donor. If left untreated TTTS driven anemia will be terminal for the donor baby. Again, if intervention corrects the transfusion then anemia will correct itself.

What Can You Do Now?
The first thing you should do upon receiving a TTTS diagnosis is find out the answers to the following questions if possible:
  • Gestational Age
  • Are they same sex (even if you do not want to know the sex you NEED to know if they are the same, whatever they are)
  • Single Placenta (Ask if there is any previous evidence of there being 2 placentas, this may help identify a fused placenta)
  • Size difference between babies
  • Fluid level on each baby
  • Are hydrops present
The second thing you should do is schedule a second opinion.
This is no reflection on your doctors abilities. Twins are rare. ID twins are rare among twins. TTTS is rare among ID twins. Some OBs can go their whole careers without diagnosing a single TTTS case. Most see only a handful throughout their career. There have been a lot of advances in diagnosis and treatment over the past 5-8 years. Since doctors do not see it often, they do not necessarily feel compelled to spend much time keeping up to date with it. It is always my recommendation to get a second opinion from one of the leading experts in the TTTS field. One good thing about the second opinion here is that it does not require a second trip to the doctor. They can review the U/S results remotely. You need only get in touch with the two doctor's offices and they will transfer the information. Typically contacting one or the other is enough as long as you supply the information of the other.

The third thing you should do is find hope. Seek out someone who has traveled the road of TTTS. Often the prognosis is grim. When left untreated Chronic TTTS diagnosed before week 25 is so close to 100% fatal that survival odds are almost negligible. You may be told you have at best a 5% chance of taking even 1 baby home some day. Most parents are devastated. When a parent finds out that a child is on the way, they begin preparing emotionally and logistically. When they find out there are 2 babies on the way, they often go into overdrive and double their commitment to the pregnancy. After all it is 2 babies not one. It is difficult enough to come to terms with the fact that it is twins. To deal with the imminent loss of both is typically devastating. I cannot encourage strongly enough to get in touch with someone who has walked this road ahead of you. Today, with treatment there is a lot of reason for hope. Between the various techniques, TTTS patients enjoy a tremendous success rate. Due to the low occurrence of TTTS in the population and the newness of some of the treatment plans, it will take a number of years before anything resembling good statistics can be quoted.

TTTS moves very quickly once it begins showing its ugly head. You do not always have time to sit back and ponder the options. You must be quick and decisive. To create a proper action plan, you need a lot of information and you need it quickly. You will not have the luxury of getting over the shock of the diagnosis before you need to take steps in your attempt to avert what is inevitable if untreated.

I have provided some links and other information regarding resources for TTTS. These sites are not affiliated in any way with TwinStuff. Some belong to Doctors or Hospitals. Others are charitable foundations. I am also, not a doctor, nor do I play one in the chat rooms. I am the father of surviving TTTS twin girls and have traveled this road. I have read a massive amount of information on the topic and feel that I am capable of finding answers or directing to those that can provide them. I also provide the best information I can to several prominent message boards regarding this topic.

Definitions
  • Recipient: The baby that is receiving the extra blood from the transfusion
  • Donor: The baby that is receiving less blood as a result of the transfusion
  • Stuck Twin: The donor twin will appear stuck to the wall of the sack on an U/S. This is because there is little or no amniotic fluid inside the baby's sack and the dividing membrane has shrink wrapped to the wall. The membrane separating the twins can be difficult or impossible to find when the Donor is complete Stuck to the wall of the sack.
  • Hydrops: Water droplets that form in the babies body tissue as a result of organs being overworked.
  • Stage I TTTS: Less then 2 cm of amniotic fluid on the donor and greater then 8 cm of amniotic fluid on the recipient.
  • Stage II TTTS: Same as Stage I without any visible bladder on the Donor baby.
  • Stage III TTTS: Same as Stage I (atypical) or Stage II (classic) with Critically Abnormal Dopplers.
  • Stage IV TTTS: Same as Stage III with visible Hydrops
  • Stage V TTTS: One or both babies have died
  • Amniocentesis: The periodic draining of amniotic fluid from the sac of the recipient in order to balance the pressure between the babies.
  • Septostomy: The intentional rupturing of the dividing membrane. This creates a MoMo pregnancy (see Mono Amniotic below).
  • Fused Placenta: When the placentas of fraternal twins form close together in the womb, it is possible for them to grow into each other. On and U/S they are almost indistinguishable from a single placenta. Even post birth biopsy can confuse a single placenta with a fused placenta. In some percentage of identical twins there are actually two placentas and not one. These often fuse since there is a high likely hood of womb implantation being within a small vicinity.
  • Mono Amniotic (MoMo): Some identical twins share both the Chorionic sack and the Amniotic Sack. This is not the typical configuration for identical twins and has many risks associated with it. Cord entanglement risks will usually direct doctor to want to deliver babies at or before 32 weeks gestation dependent upon cord entaglement and position. TTTS patients are sometimes misdiagnosed as MoMo since in both cases there is no visible dividing membrane (see Stuck Twin above).
Links
TwinStuff Health Issues and Special Needs Forum
This site's forum for supporting Health Issues
Provides message board support
Provides a private forum

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. Rubn 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
mspatz@chla.usc.edu
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 laymans 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...ocuments/www/co
E-mail: jedelia@covhealth.org
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: mallenrn@aol.com (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.cincinnat...ldrens.org/svc/ prog/fetal-care/default.htm
E-mail: fetalcarecenter@cchmc.org
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.fetalsurg...u/tttxstd.shtml

Fetal Treatment Center
University of California San Francisco
513 Parnassus Avenue
HSW 1601
San Francisco, CA 94143-0570
1-800-RX-FETUS
Fax (415) 502-0660
web address: http://www.fetus.ucsf.edu
email: fetus@surgery.ucsf.edu

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: Francois_Luks@brown.edu
Telephone: (401) 421-1939
Mailing address:
101 Dudley Street
Providence, RI 02903
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Eric, DH to Laura :22: (1995-03-18)
Proud Daddy to: :laughing:
Isaac Sumner (2000-08-03) 8lbs 13oz 22 1/2"
and 32 week TTTS Survivors :5:
Natalie Grace (2003-03-01) 4lbs 4oz 17 1/2"
Noel Mae (2003-03-01) 3lbs 15oz 16 1/2"


Home Page / Photos / TTTS Resource / TTTS Foundation / Fetal MD
However, as it is written: “No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him”

#5 lmBurlingame

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Posted 05 November 2006 - 04:15 AM

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.
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#6 Dragonfly76

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Posted 14 March 2006 - 08:37 AM

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.
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Irina, 30 - wife to Anatoliy, 32. Mother to Sophia Haya and Maria Zoya born at 34 wk 5 d. - 4 Lb. 7 Oz and 4 Lb. 6 Oz. respectively. Acute TTTS survivors. Maria - recipient -spent 10 days in the NICU. Sophia - donor - came home after 4 month and 1 week in the NICU.

Sophia is suffering from the acute renal failure and is on peritoneal dialysis at home. She's going to stay on it until she gets a kidney transplant (22 Lb or 2 years of age, whatever comes first)

#7 scooterrrd

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Posted 25 February 2007 - 06:31 AM

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
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#8 2gherkins

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Posted 28 April 2007 - 03:28 PM

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.
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#9 ThreeSetsOfTwins

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Posted 30 April 2007 - 11:38 AM

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....
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#10 Safari

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Posted 14 November 2007 - 02:46 AM

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.
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#11 missmomoftwins02

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Posted 08 January 2008 - 12:56 AM

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!
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#12 kj427

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Posted 24 March 2008 - 09:55 AM

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.


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Karlie, married to Paul 8/20/99

Mommy to:

Abigail Marie 2/15/01 (31 weeks, c-section, 8 week NICU stay)
Samuel Paul 2/10/05 (39 w, VBAC)



TTTS survivors born at 36w1d

#13 firsttwin

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Posted 07 June 2008 - 11:36 AM

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.

Edited by firsttwin, 07 June 2008 - 11:38 AM.

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#14 desolation_anonymous

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Posted 23 July 2008 - 05:19 PM

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?
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#15 chloe.jong

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Posted 14 August 2008 - 12:49 PM

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

Your help is much appreciated.

Chloe

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#16 Eeyoregirl

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Posted 20 October 2008 - 03:53 PM

QUOTE(chloe.jong @ Aug 14 2008, 01:49 PM) View Post
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.



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#17 bkwg333

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Posted 27 October 2008 - 08:53 PM

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
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#18 Brizzy_Twins

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Posted 02 December 2008 - 11:17 PM

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!
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I'm Tamara - Identical Twin Sister to Alisha from Brisbane, Australia
Stage 2 - TTTS Survivors and Born 16 Weeks Premature
Tamara & Alisha (22 Years Old) 22 May 1991
Email me: tamara@maraslastingmemories.com


Mara's Lasting Memories: Digital Media Business:

"Dont Let them fade away with time, affordable prices for all your digital needs."
My Website|| My Business Facebook Page||

#19 Emily@Home

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Posted 07 December 2008 - 12:50 AM

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.
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Emily
Wife of Chad
Mama to Crash (1/25/01),
Spike (11/3/02),
Little Rabbit (10/30/06),
& Identical Twin Babies Rex & Viper (6/13/08)

Some facts about us:
**TTTS Twins, Stage I born vaginally w/ epi @ 34w1d (Donor 5 lbs., Recipient 6 lbs. 12 oz.)
**13 weeks Bedrest (7 weeks in hospital)
**NICU time: 1 week and 2 weeks
**Experience with Breastfeeding Preemies/NICU Babies
**Still breastfeeding



#20 shai

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Posted 14 December 2008 - 09:08 PM

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...
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