Its been a bit hectic around here lately. As you know, I had my 20 week US on Mon and the results were abnormal. At my follow-up my Dr. didn't think it was a big deal, but I knew it should be sending up a red flag based on the type of twins I am having (they have independent amniotic sacs but share an outer sac and placenta). Since my dr. gave me the brush off I started looking for answers elsewhere. I had a consultation over the phone with Dr. Julian DeLia (Thank you, YumaDoula). He is *the* expert on TTTS and the dr. who pioneered the laser surgery used to treat it. He confirmed what I already suspected. The twins have Twin Twin Transfusion Syndrome. He said I needed to be evaluated within 24-48 hours...before the weekend.
I got a referral to a peri in Atlanta who is familiar with the syndrome and I went to Atlanta last night and had a Level II US at Northside hospital today. The Dr. there again confirmed the diagnosis. From here on out, I will be transfered to a high risk OB in Macon and will deliver at the hospital there since they have a NICU. If I carry as long as they hope, they expect I will carry to 34 weeks. Right now the syndrome is stage 1 which is good but can advance to a critical stage literally overnight. I will be monitored weekly by US. If the syndrome reaches stage III before I am in my third trimester, I will be sent to a specialist in Cincinati for surgery. If I am in my last trimester they would likely just deliver the boys immediatley.
Please pray for me and the boys. There is a high likelyhood of morbidity of one or both babies and a positive outcome after surgery is only at about 63% with the best specialist in the country. I am thankful it is not worse at this point, but tripidatious as every day could bring a change. Please pray.
The ONLY reason I have gotten as far as I have is because I have taken a very active role in my own care. I actually had TWO doctors blow me off before I went to DeLia for answers. Please share the following link with any woman you know who could be carrying identical twins. This syndrome affects approx. 15% of all identical twin pregnancies and the rate of morbidity for both babies approaches 100% without diagnosis and treatment. Please help educate our sisters - our doctors are not infallible.http://www.tttsfoundation.org