Planning ahead - TTTS Race for Hope

The TTTS (Twin to Twin Transfusion Syndrome) Race for Hope is coming to Denver on November 9th. You can check out this link for more information: http://www.fetalhope.org/ttts-race-for-hope.html

In yet another "not ha-ha funny" moment of my recent life, I'll be doing my first 5K for a condition that actually affected my life. Sure, I did the Alzheimer walk in memory of my grandfather, but this one feels different. More close to my immediate life I guess. Amy and I used to run these 5Ks all the time just because we liked running. I always found them touching and I was glad to be part of them - don't get my waterworks started talking about the Organ Donor one where the family of the donor child met the family of the recipient...man, that was one of the most emotional things I've ever witnessed - and I'm a NICU mom who cried every day for 50 straight days. So you know it was emotional :) Anyway, this race will be different for me because I'll complete it in honor my little girls. With all the other issues Clara and Evelyn have had, it's easy to forget they are TTTS survivors. Let's see if I can get through it without crying.

Other TTTS races will also be held. I encourage anyone near these areas to attend or to donate a pledge.

September 20, 2008 - Charlotte, NC
September 28, 2008 - Kirkland, WA
November 9, 2008 - Denver, CO
2008/2009 - Houston, TX
March 1, 2009 - Anaheim, CA
Spring 2009 - Boston
2009 Tampa

I'll close with a description of TTTS for those who may be unfamiliar:
TTTS is a serious, progressive disorder that affects up to 15% of MC twins. The twins do not have malformations, but one transfuses the other through a particular blood vessel connection. In this situation, an artery from the donor twin enters the placental substance to exchange oxygen and nutrients. Unfortunately, the corresponding vein returns "by mistake" to the other twin (the recipient) via this arterio-venous connection.

In Twin to Twin Transfusion Syndrome (TTTS) the donor twin responds by partially shutting down blood supply to many of its internal organs, especially the kidneys, has reduced urine output and therefore a small amniotic fluid volume (oligohydramnios) in its amniotic cavity. The recipient responds to the blood transfusion by producing excessive amounts of urine, and is surrounded by a large volume of amniotic fluid (polyhydramnios). It is the combination of oligohydramnios/polyhydramnios that suggests the diagnosis of TTTS.

The twins are often discrepant in size, as well, with significant discordance in estimated fetal weights. The recipient's blood becomes thick and difficult to pump around the body, and this can result in heart failure, generalized soft tissue swelling (hydrops) and fetal death. Because of the blood vessel connections across the placenta, if one twin dies, the co-twin faces significant risk for death or damage to vital organs. If a co-twin survives, there is a high risk of brain injury. Without treatment, about 70-80% of twins with TTTS will die. Survivors may have injuries to their brains, hearts and kidneys.

Take care,
Kris