Helpful Information

 


Twin-to-Twin Transfusion Syndrome Foundation

A wonderful resource for families diagnosed with TTTS. This site is a good starting point for gathering all of the information you will need to make informed decisions about your pregnancy once you have been diagnosed with TTTS.

Their mission statement:

"... dedicated to providing educational, emotional and financial support to families and caregivers before, during, and after pregnancies diagnosed with twin to twin transfusion syndrome. Dedicated to saving the babies, improving their future health and care, and keeping families together."
The web site's chart on how and when the different types of identical twins occur is helpful in understanding your risk for TTTS.
Contact the TTTS Foundation:

        Voice: (440) 899-TTTS

                  Email: info@tttsfoundation.org

Fetal Hope Foundation 

Another wonderful resource for families diagnosed with TTTS, as well as other fetal issues. In addition to a great deal of helpful medical information, this site also has message boards, family stories, and information on how to help the TTTS community.

Their mission:

"to provide support, provide information, fund research, increase awareness and be an outlet for leading medical information pertaining to fetal distresses and syndromes. We are all about arming families with information to save their baby's lives.

Aligned with some of the world’s leading fetal medicine centers, Fetal Hope has been organized to provide accurate and factual information for families dealing with syndromes such as Twin-to-Twin Transfusion Syn
drome (TTTS), Acardiac Twinning (TRAP sequence), Amniotic Band Syndrome (ABS) and Fetal Lower Urinary Tract Obstruction. Our organization is about HOPE. No family should ever be offered no hope."
Contact the Fetal Hope Foundation:

        9786 South Holland Street

        Littleton, CO 80127

        Voice: 877-789-HOPE or 303-932-0553

                  Email: info@fetalhope.org

USF Fetal Therapy Center

"The University of South Florida Fetal Therapy Center provides patients and physicians with the latest and most advanced resources in the field of prenatal diagnosis and therapy.."

Dr. Rubén Quintero, Professor and Director of Maternal-Fetal Medicine in the Department of Obstetrics and Gynecology, University of South Florida

"A world-renowned fetal surgeon, Dr Quintero is known for developing the current technique that selectively identifies and lasers vessels involved in Twin Twin Transfusion Syndrome (TTTS) allowing each fetus to maintain its own blood volume. Dr Quintero proposed the staging classification of TTTS that is used worldwide. He has authored dozens of original scientific papers, book chapters and review. A frequently invited speaker at educational conferences, Dr. Quintero is the editor of the first book on minimally invasive fetal surgery, Diagnostic and Operative Fetoscopy, published in 2002."

Contact Dr. Quintero:

        Toll Free: 877-FETAL-77

        Outside the U.S.: 813-259-8513

        Fax: 813-259-0839

        Email: rquinter@health.usf.edu


The International Institute for the Treatment of Twin to Twin Transfusion Syndrome at St. Joseph Regional Medical Center

"St. Joseph Regional Medical Center-Milwaukee is the site of an international institute, which performs life saving surgery to correct this problem before the babies are born. It is the only fetal treatment center in the world specifically dedicated to this disorder."

Dr. Julian De Lia is the physician at this Milwaukee hospital who treats TTTS, including performing the laser surgery that identifies and "disconnects" the communicating blood vessels that cause TTTS.

Contact Dr. De Lia:

        Email: jedelia@covhealth.org


Twin to Twin Transfusion Syndrome Awareness

A worldwide "information, research and support site for those diagnosed with Twin to Twin Transfusion Syndrome."

"This Web Site offers information about Twin to Twin Transfusion Syndrome including information on the diagnosis, treatment, pregnancy, birth and  post-natal outcome! Through the many views of parents and medical practitioners it provides comprehensive information and facts about Twin to Twin Transfusion Syndrome."

A wonderful site with information on TTTS, fundraising events, parent stories, helpful TTTS links, and more!

        Contact Twin to Twin Transfusion Syndrome Awareness:

                Email: crawfordak@bigpond.com

 


BeNotAfraid.Net

"Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on."

Contact BeNotAfraid.Net:

        Email: info@benotafraid.net


Parents of Premature Babies Inc.

"A non-profit foundation supporting families with children born six weeks or more before due date."

If you think your twins could be born prematurely (or if they have already arrived early), this site contains lots of good resources to help you prepare yourself for what may be to come, including recommended books, parents' stories, and information on how to handle your babies' days in the NICU (Neonatal Intensive Care Unit).


Sidelines

"Sidelines is a network of support groups across the country for women and their families experiencing complicated pregnancies."

TTTS is just one of many possible pregnancy complications, and the Sidelines group can help you with any of them, particularly those that can lead to doctor-mandated bed rest.  In addition to a web site full of resources, they have a team of volunteers who have experienced their own complicated pregnancies and are there to help you through yours, via telephone or e-mail, on a schedule that best fits your needs.


BabyCenter.com Bulletin Boards

Another good place to interact with or read about families and their pregnancy experiences, including those with multiples and/or pregnancy complications.


National Organization of Mothers of Twins Clubs, Inc. (NOMOTC)

"The National Organization of Mothers of Twins Clubs, Inc. (NOMOTC) was founded in 1960 for the purpose of promoting the special aspects of child development which relate specifically to multiple birth children."

This is a great resource for those who have or are expecting multiples; many cities have their own chapters which provide local support.


When You're Expecting Twins, Triplets, or Quads, by Dr. Barbara Luke and Tamara Eberlein

There are many books out there on how to achieve and experience a successful pregnancy, but many of them have only a small section (if any) on twin pregnancies.  This book addresses all of the special needs and circumstances that surround carrying more than one child, including selecting your best medical team, what (and how much!) to eat, signs and symptoms of complications, and what to expect in the NICU if you deliver early.