Philly--2nd Time

We left home this morning at 7 to have a follow-up ultrasound at CHOP. We got good news: instead of progressing, the TTTS has remained in early Stage 2. In fact, Doppler readings (measuring blood flow of the fetuses) had improved slightly. Though the Deepest Vertical Pocket in the larger fetus had increased, Dr. Moldenhauer assured us that this increase would, in fact, make next Monday's surgery easier. The amount of fluid surrounding the recipient twin and the location of the placenta (posterior) are apparently very good conditions for the laser surgery. Yet again, the people at CHOP were patient, thorough, and reassuring.

In NYC, we're switching C's primary care to Dr. Lynn Simpson at Columbia. Thanks to those of you who have given us suggestions. We've been assured (confirmed by exhaustive Googling) that Dr. Simpson has ample experience with TTTS. She's apparently a highly sought-after doctor, so we may have regular (weekly) ultrasounds with members of her staff and her fellow doctors for a bit before we actually get to meet with her.

Many thanks again to our friends and families, with special gratitude to our new friends at OP, who've been unbelieveably supportive.

Next Sunday, C's mom flies in from Indianapolis to be with us for the week of the surgery, which begins the following morning.

Thanks again for your thoughts and good wishes.

Resources

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81149 (CHOP's twin-twin page--click 'watch our CDH video' in addition to reading the info provided)

http://www.tttsfoundation.org/  (TTTS Foundation)

tttsmd.org (Dr. Julian De Lia)

Philadelphia

Friends,

All things considered, we received very good news yesterday.

After a week of uncertainty, we drove to the Children's Hospital of Philadelphia (CHOP) yesterday.  C was at 16 weeks and 3 days.  Ultrasound and Echo Cardiogram confirmed that we had indeed reached early Stage II Twin-to-Twin Transfusion.  Stage II is marked by (among other things?) the inability of the donor twin to fill his bladder with urine.  This development indicates that the donor (smaller) twin has, due to lack of vital fluids, begun to prioritize his vital organs and entered a so-called 'survival mode'.  The recipient (larger) twin develops thicker walls in the heart as a result of having too much fluid.

CHOP, aside from having the most unfortunate acronym for a hospital, was astonishing.  The receptionist, counselors, nurses, and doctors were thorough, patient, and kind.  We arrived at 10 am (having spent the previous night at a nearby Comfort Inn) and stayed until nearly 6 pm.  At every step, our caregivers checked in with us to make sure that C was comfortable and that she and I understood the process.

At the end of the testing, we met with Dr. Mark Johnson who recommended a procedure called Fetoscopic Laser Surgery.  This procedure involves severing the placental connections between the twins, resulting (one hopes) in the restoration of balance with regard to blood flow, nutrients, etc.   Approximately 80% of TTTS cases treated with laser surgery result in successful delivery of both twins.  Dr. Johnson believes we should wait until C is at 18 weeks (July 6th) to perform this procedure.  Until then, we'll keep C on modified bed rest and she'll supplement her regular diet with Ensure after every meal (a recommendation made by Dr. De Lia in Milwaukee and supported by the TTTS Foundation, though the medical community at large has not verified the efficacy of bed rest and protein drinks).  Also, we'll check in at CHOP next Tuesday (June 30) to make sure that TTTS hasn't progressed.

The quality of care we received at CHOP was truly excellent.  After some poor experiences with doctors in NYC, we were greatly relieved to find ourselves in competent hands.  We're by no means in the clear, but 80% is much better than what we'd heard from our last doctor.

Our gratitude to Dr. Lysikiewicz (St. Luke's) who diagnosed us, to Dr. Julian De Lia (Wheaton Franciscan), to Mary Slaman-Forsythe (TTTS Foundation), to Dr. Mark Johnson (CHOP), to Joy McDonald (CHOP), to everyone at CHOP, and to our family and friends, whose constant support continues to comfort and sustain us.