For most couples, starting a family is simple: they decide when they want to have children, they get pregnant, and nine months later, they deliver a beautiful, healthy baby. For some couples, however, it is not that easy. Many have fertility issues. Others have complications during the pregnancy. Still others have problems surrounding the birth. We experienced all three.
After three years of trying to conceive a baby (including several invasive and costly fertility treatments), my husband and I found out that we were finally pregnant. In the months that followed, we experienced the joy (and shock) of learning that we would have twins, the heartbreak of learning that they were slowly dying, fetal surgery, 88 days of bed rest, three serious pre-term labor scares (and the horrific drugs that you must endure to stop early contractions), an emotional roller coaster that threatened our sanity too many times to count, and the ultimate doctor-mandated premature delivery of our boys, eight weeks before their due date.
Twin-to-Twin Transfusion Syndrome (TTTS) is the devastating disease that started our roller coaster ride. It is a disease that affects identical twins, when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. One baby (the recipient) gets too much blood, which can overload his heart to the point of failure and death; the other baby (the donor) gets too little blood, which deprives his body of nourishment to the point of starvation and death. Although there is nothing wrong with the babies themselves, without treatment, both are usually lost.
The two keys to surviving TTTS are diagnosis and treatment.
TTTS is fairly rare: the TTTS Foundation estimates that about 6,000 babies are affected each year, and that 4,000 of those babies die. Because it is uncommon, many doctors are not familiar enough with the symptoms to correctly diagnose it. Many of those that are able to make an accurate diagnosis are unfamiliar or uncomfortable with the available treatment options, often times recommending that the parents terminate the pregnancy.
If you suspect that you have symptoms of TTTS, we encourage you to arm yourself with as much information as you can handle (please see the "Helpful Information" section of this site for our suggested sources). If you are not comfortable with or confident in your doctor's ability to completely manage your twin pregnancy, please find another one who can.
We have also included our pregnancy experience ("Our Story" link), not for dramatic effect, but as an example of survival: a success story to offer hope for anyone going through TTTS.