Monday, July 21, 2008

Twin-Twin Transfusion Syndrome (TTTS)

We went to our 20 week check-up expecting everything to be fine. But when we got there, the doctor told us that the rare condition we were at risk for with these type of twins, was happening.

It is called Twin-Twin Transfusion Syndrome or TTTS. Twin to twin transfusion syndrome (TTTS) is a disease of the placenta that affects identical twin pregnancies. The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins. Depending on the number, type and direction of the connecting vessels, blood can be transfused disproportionately from one twin (the donor) to the other twin (the recipient). The transfusion causes the donor twin to have decreased blood volume. This leads to slower than normal growth than its co-twin, and poor urinary output causing little to no amniotic fluid. The recipient twin becomes overloaded with blood. This excess blood puts a strain on this baby’s heart to the point that it may develop heart failure, and also causes this baby to have too much amniotic fluid. Without treatment, most of these babies would not survive and of the survivors, most would have handicaps or birth defects.

We were stunned. We immediately asked "what do we do to fix it?" Our doctor said that we would go to Philadelphia to the Children's Hospital (CHOP) and have laser surgery to find the connecting vessels and disconnect them. This was discovered on a Thursday we were scheduled to go to Philly the following Tuesday. We spent the entire weekend calling everyone we knew and asking them to pray. We had to get plane tickets, some where to stay, decide what to do with the girls, and somehow not go crazy with worry. We were terrified - Tuesday seemed so far away and we had so many questions.

We went back Monday to recheck things and make sure it was okay for me to fly. We received more bad news. The babies condition seemed to have gotten worse over the weekend. The fluid levels in the recipient were even higher and she had some limited blood flow. The donor had so little fluid that they couldn't even measure it and she also had significant decrease in blood flow. Our doctor was very concerned and even called to see if we could come sooner. Philly was not as concerned so we kept our original flight on Tuesday afternoon.

When we finally got to Philly we actually breathed a huge sigh of relief. We were so glad just to be at a place where they could help us. My Aunt Kay came up on Wednesday and she went with us over to CHOP. We spent the day having several tests - ultrasound and fetal echocardiogram. The ultrasound scan took over an hour and a half and then I had to lay superstill for about 45 minutes so they could do the fetal echocardiogram to determine if there was any damage to their hearts. After studying their results, they presented us with our options. It was really scary to see the statistics for all the different options. If left untreated, there would be a 80-100% chance that one or both of the babies would not survive. We chose the fetoscopic laser surgery which had the highest survival rates - 60-75% chance that both babies would survive.

The surgery was scheduled for Friday morning. I was not put to sleep so it was weird to be able to see and hear things even though I was heavily sedated. They estimated that the procedure would take about two hours. There was a team of three surgeons led by Dr. Bebbington plus two nurse practitioners that did the surgery. They were able to find and "disconnect" 10 connections between the babies. They also removed 2000 cc's of fluid which is about 2 liters. I spent the night at the hospital and then got to go back to the hotel Saturday morning. We had to stay in Philly for a week following the surgery and I had to be on bedrest the entire time. Ken's parents brought the girls up so I would not have to be away from them for so long. They ended up getting to do some pretty cool things. Ken took them to see my Grandmother Mickey in NJ and then he took Karlee to the Children's Please Touch Museum. She had a BLAST!!! There was a mini grocery store where the kids could shop for groceries, produce and meat. On Tuesday, he also took them to see the Liberty Bell. Karlee was very impressed with size of the bell - I guess she was expecting it to be small. Over all - I think the girls really enjoyed it.

I had a check up after a week and things looked great!! The fluid level in the donor had risen and the fluid level in the recipient was much lower. Kamryn (the donor) was basically a miracle - she was in really bad shape when we arrived a week earlier. Kourtney (the recipient) had shown some signs of heart problems when we arrived and her heart looked much better when we left. We are so grateful to our doctor here for picking up on the problem so early and sending us to CHOP - one of the best fetal surgery centers in the country. Everyone we encountered at CHOP was wonderful - they were so caring and concerned. We received the best possible care.

God is so good - I can't imagine how someone would get thorough a situation like this without knowing that God is in control and that he has a plan - a plan to prosper us and give us a hope and a future!!

1 comment:

Maxine said...

God is good! My whole church has been praying for you all. I am thrilled that things are so much better. Please keep me posted on your progress. Love you all!

P.S. I love your blog and the names of your girls! Terrific job - on blog and names!