How often are we intrigued and amazed by the sight of identical twins? Little do we know how often identical twins don't survive pregnancy or birth due to a deadly complication called Twin-to-Twin Transfusion Syndrome. TTTS kills more babies every day than SIDS, yet hardly anyone outside the twins community has heard about this potentially fatal condition. Here is a description of TTTS by the Fetal Hope Foundation:
TTTS or Twin-to-Twin Transfusion Syndrome is a disease of the placenta. It affects pregnancies with monochorionic (shared placenta) multiples when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. One baby, the recipient twin, gets too much blood overloading his or her cardiovascular system, and may die from heart failure. The other baby, the donor twin or stuck twin, does not get enough blood and may die from severe anemia. Left untreated, mortality rates near 100%.
The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor) to the other twin (the recipient). The donor twin develops oligohydramnios (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydramnios (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, and/or preterm (early) labor leading to miscarriage of the entire pregnancy.
One in 7 pregnancies with identical twins is afflicted with TTTS. Before the condition could be diagnosed by ultrasound, less than 10 percent of TTTS twins survived. Those who did survive were often greatly impaired. Now the odds of survival have significantly improved through medical intervention during pregnancy and after birth. Many parents of TTTS twins (as well as those parents who have lost twins from this condition) have benefited greatly from support groups. Two such organizations are the Twin to Twin Transfusion Syndrome Foundation at www.tttsfoundation.org and the Fetal Hope Foundation at www.fetalhope.org.
Please take a moment to watch this moving slide slow about a couple's journey through TTTS: http://www.ssmpfiles.com/ourtttsjourney/index.html.
Comments
TTTS
This slide show is much needed as we have not been able to articulate what happened to us to the few that are willing to listen. I have sent a dear friend to view the video and it opened her eyes to TTTS.
My husband and I lost both of our girls to TTTS. It was the most horrifying thing we'd ever gone through. One of the girls died as a result of the surgery that was to save them. Our other twin lived for 19 days. They were born on 07/19/2007.
Our grief is still fresh. We pray for them every night and send goodnight kisses to them in heaven. Since, God has blessed us with another set of twins due in June 08!
Your Loss
I'm so sorry to hear of your tremendous loss. I'm glad that the video was helpful in explaining what happened to those who can't or won't understand. Unfortunately, in times of tragedy, people often step away from the pain instead of sharing it with us. Thank you for sharing your story, and all the best to you with your new babies!
Susan M. Heim is the author of It's Twins! Parent-to-Parent Advice from Infancy Through Adolescence and Twice the Love: Stories of Inspiration for Families with Twins, Multiples and Singletons.
TTTS
Thank you for posting this slide show. I sit here crying over it as I hold my boys. On March 3, 2008, nine days ago, I gave birth to my TTTS survivors at 36 weeks. Tiny, but perfect, having beat this horrible disease, it is still easy to tell which was our donor twin and which was our recipient.
TTTS education is such an important goal. It's one that needs to be a focus of every twins group. I was horrified at the lack of knowledge about TTTS in the general obstetric community during my pregnancy. Two different OBs failed to recognize that there was a problem because they were looking for the text-book picture of TTTS - an ultrasound showing the end stage of the syndrome. Even after coming under the care of a maternal fetal medicine specialist I was dumbfounded at what is considered the standard of care for TTTS twins and twins in general. No OB would take me on as a patient after I left my first OB because I was deemed too high risk. In just the few short months between diagnosis and birth, I came in contact with two other mothers in my area who lost their twins to TTTS through mismanagement or misdiagnosis.
It is unacceptable for the medical community to be so poorly informed that TTTS remains such a horrific diagnosis when so much more could be done with a little knowledge!
To all parents of multiples, educate yourselves so you can help educate others. Be nosy and overbearing if you meet a woman pregnant with twins. Your insight could save lives and it is more likely than not, she's never even heard of TTTS. The people who need this information most may never make it to their first multiples club meeting because of TTTS. It's time to be proactive.
TTTS
I whole heartly agree with the comment that OBs are poorly informed and educated on this. My TTTS survivors just turned 5 on March 6, but boy is it a miracle! My identical twin boys were not diagnosed until AFTER they were born (up until that point my doctors and midwife said every thing was normal). Keep in mind, I have a Master's Degree in Science education so I consider myself well informed. This was also my third pregnancy. I never missed an OB appointment and I did ultrasounds and biophysical profiles every week from about 25 weeks on. At about 20+ weeks, I told my husband, "one of the babies isn't moving as much as he used to." He kept asking me about that baby, but wasn't overly concerned because he wondered how I could really tell which baby was moving or not (A MOTHER KNOWS - ALWAYS TRUST YOUR INSTINCTS!) At 37 weeks and 6 days I went in to be induced (just because the doctor and midwife I wanted were on that week). Everything was saying "normal delivery" both babies were head first and I was dialated 3 centimeters. I arrived at the hospital at 8 am and had just finished the paperwork and was given my IV by 9 am -- by 9:30 nurses were running in asking me to turn over to my side, giving me oxygen and by 9:45 I was rushed in for an emergency c-section. The boys were born at 10:59 and 11:00 baby A was bright RED, 3 APGAR and swollen. Baby B (the one that I thought wasn't moving as much) was waxy white, 1 APGAR and not moving! Imagine my surprise when all this happened after I had been told at all of my appointments "everything was going well." Doctors need more education and Twin moms need to help other twin moms be informed. Lonnie Somers, president of Fetal Hope Foundation, is doing a phenomenal job informing but funding for research and education must continue. I encourgage all moms of multiples to go to their website and purchase a TTTS calendar so that we can save more twins lives.
Fetal Hope calendar
Hi Jody,
Thanks for the great suggestion to order a calendar from Fetal Hope to support research into TTTS. Their store website is at www.fetalhope.org/store.html. They also have some other great products for purchase! I've included a link to their website on the Links page of TwinsTalk, too.
Susan M. Heim is the author of It's Twins! Parent-to-Parent Advice from Infancy Through Adolescence and Twice the Love: Stories of Inspiration for Families with Twins, Multiples and Singletons.
The Need for Education About TTTS
Dear Lisa,
Thank you so much for posting this very valuable information and advice. I am so glad to hear that your twins survived TTTS, but, as you noted, many do not, and everyone, from parents to the medical community, is woefully uneducated about this deadly condition. Your own testimony is proof that early intervention and insistence on the right care can save babies' lives.
Susan M. Heim is the author of It's Twins! Parent-to-Parent Advice from Infancy Through Adolescence and Twice the Love: Stories of Inspiration for Families with Twins, Multiples and Singletons.