December is International TTTS Awareness month, with World TTTS Awareness Day falling on December 7th. Many buildings across the world will be lit with blue lights to honor those who have been effected by this syndrome. The symbol for Twin to Twin Transfusion Syndrome Awareness is a light blue ribbon with a daisy in the middle.
This year, in order to raise even more awareness, I have joined a challenge to #FightTTTS by posting a video each day. The video will feature a different family, mine included, that has been impacted by TTTS. We will all be sharing a fact a day in hopes that people will share and educate others about this deadly syndrome. You can find all the videos on my Facebook Page. I will also be posting my family’s video right here on Saturday’s post.
What is TTTS?
According to The Twin to Twin Transfusion Syndrome Foundation Website,
Twin to twin transfusion syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies. TTTS affects identical twins (or higher multiple gestations), who share a common monochorionic placenta. The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins.The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive. The events in pregnancy that lead to TTTS – the timing of the twinning event, the number and type of connecting vessels, and the way the placenta is shared by the twins are all random events that have no primary prevention (see section on The Monochorionic Placenta), is not hereditary or genetic, nor is it caused by anything the parents did or did not do. TTTS can happen to anyone.
It should also be noted that on rare occasions, if 2 placentas fuse early on, Fraternal twins could also be effected by TTTS.
Even though TTTS is said to be rare, I know way too many people who have been affected by it. It is a devastating disease that claims the lives of far too many babies each year, even more than SIDS. In addition, even TTTS survivors can face many challenges such as premature births. This is the reason that my boys were born so early.
My own boys had a combination of Twin to Twin Transfusion Syndrome and SIUGR (Selective Intrauterine Growth Restrictions, which is unequal placental share.) Upon examination of their placenta, they had 4 abnormal connections and a 90/10 split.
How can you help?
1. Talk about it.
TTTS is not a well-known disease, but it needs to be. Awareness is an important step to finding a cure. Please share this blog post, share the Twin to Twin Transfusion Syndrome Foundation’s website, or share some facts about TTTS on your own Facebook page, blog post, etc.
2. If you’re pregnant, or know someone who is pregnant, urge them to get an early ultrasound.
It is so important to find out as soon as you can if you’re pregnant with twins. Identical twins are a random act, so this kind of twinning doesn’t have to “run in the family.” If you are having twins, you must find out if there is one placenta or two. This is the most important thing you can do.
I found out I was pregnant with twins at 8 weeks. I then saw a high risk specialist at 12 weeks. Do not wait any longer to find out what type of twins you are carrying.
If you have one placenta, you need frequent monitoring and ultrasounds by a highly trained specialist. If Twin to Twin Transfusion Syndrome does occur, there are treatment options, such as fluid reductions and surgery.
3. Talk about it some more.
Even when we attended the Twin fest this summer, hardly anyone knew what Twin to Twin Transfusion Syndrome was, and there were a TON of identical twins there.
Right now, knowledge is the biggest weapon we have to fight TTTS.
4. Donate to the Twin to Twin Transfusion Syndrome Foundation
Mary, the founder, lost one of her twin boys and started this Foundation 25 years ago. She is an amazing person who will spend hours of her time talking to you, helping you find a specialist, and making sure you can afford the care you need. Dr. Julian De Lia, the founder of TTTS laser surgery, is on her board. They are two of my heroes. Your money is in good hands.