Tuesday, January 13, 2009

Our Battle with Twin to Twin Transfusion Syndrome

I just want to share my story because I am so grateful that it has a happy ending. With 3 previous difficult pregnancies, I knew this had to be my last... so imagine my surprise when I found out I was having twins (at 14 weeks)! I was excited at being able to fulfill my desire to have a large family and getting 2 for the price of 1.

I should start by saying after having 3 beautiful daughters, my husband and I decided we wanted to have "just one more". And, as with my first 3 pregnancies, I got pregnant right away. Nothing seemed out of the ordinary, same amount of morning sickness etc. until September '06 when we went for our first ultrasound, at 14 weeks. Now that is actually quite unusual for Canada, usually they don't do an ultrasound here until 18-20 weeks. But my new doctor routinely does them around 14 weeks just to make sure everything is going well in there.

So at this ultrasound is how we found out we were having twins! With my second pregnancy we had experienced "vanishing twin syndrome" so I was in total disbelief and the first question I asked the tech was "and they're both the same size and have heartbeats?" She assured us that both babies looked great and that she suspected they were identical because it appeared there was only 1 placenta and only a thin membrane separating the twins.

Some months earlier I had happened to see an episode of Dateline that talked about Twin to Twin Transfusion Syndrome so at my next doctor's appointment I expressed my concern about it. He assured me that is was "rare" and I did not need to worry about it. I had another ultrasound at 20 weeks where again, everything looked great with the babies. I thought I was in the clear and convinced myself to stop worrying.

Saturday, November 25, 2006: I begin have a lot of cramping and contractions. I ask my husband to take a photo of my belly because it seems that I have "popped" out over night. I had convinced myself not to worry so I push all these feelings aside.

Tuesday, November 28, 2006 (24 weeks): I have been having contractions and cramping all weekend but trying to ignore it, knowing I have a routine ultrasound that day. The ultrasound tech is quiet, he says he is looking at the one baby and takes some time but when he gets to the other baby he is quick and excuses himself from the room. I have been trying to think positive so I don’t let this alarm me. A few minutes later my husband and the doctor come in. She proceeds to tell me something I had been fearing since finding out I was carrying identical twins. My babies are suffering from Twin to Twin Transfusion Syndrome, a condition that only affects identical twins sharing one placenta. This explains why I have been having so much cramping. The condition causes the blood and nutrient flow through the placenta to the babies to be uneven. One baby gets too much (recipient baby) and the other baby doesn’t get enough (donor baby). The sac around the recipient baby fills with excess fluid and leaves the donor baby with little or no fluid. This puts both babies in great danger. The doctor tells me that I am in Stage 2 TTTS and that Twin A still has a little bit of fluid around her, which is good. I begin to cry and cannot believe what I’m hearing. The doctor tells me I am a candidate for laser surgery and goes to call Dr. Ryan in Toronto, the only doctor in Canada who specializes in TTTS pregnancies. Moments later I am receiving steroid shots to help the babies’ lungs develop in case of premature labor. The doctors want me to get on a plane for Toronto that same day but I have to go home and make arrangements for my 3 children. Needless to say, I do not sleep that night.

Wednesday, November 29, 2006: We have made arrangements for our 3 girls to stay with wonderful family friends and leave for the airport, with a stop at the hospital for another steroid shot on the way. My belly is so swollen with excess fluid that I can barely eat and it is hard to even sit up in a chair. I am very nervous to get on an airplane for the first time in my life, but more nervous about what is going on inside me. I am terrified that I will go into labor or that my babies will pass away at any moment. The plane ride is very difficult due to my condition and I am so glad when it’s over. We go to our hotel and spend another night worrying.

Thursday, November 30, 2006: We wake early as we have an appointment with Dr. Ryan at 8am. My belly has ballooned now, making me look like I’m well overdue at just 24 weeks. The condition has become quite painful, I can hardly sit up and eating is not even an option. We wait in a crowded waiting room, all the while, I am trying to hold back tears. Dr. Ryan is awesome and gives us some priority. He allows me to lay on the ultrasound bed while I wait for him. When he finally performs the scan, he finds that the condition has become worse. Twin A now has no fluid around her and no visible bladder. He says the good news is that neither baby shows signs of heart failure or brain damage but he cautions us that it is just around the corner. He takes us back to a room and gives us all the information. There are options but not many and the statistics are scary. If we go with the laser ablation surgery there is still only a 50% chance of both babies surviving, 80% for one baby to survive. But without it there is only a 10% chance of survival of both babies. There is also a high risk of going into labor during or after the surgery. Mike and I know that despite the risks we have to do the laser surgery. It is set for the next day. I go for blood tests and after a long day at the hospital we go to our hotel to wait. It is not long into the evening when I start having contractions and the pain is becoming severe. I am already so nervous and scared that I go to the hospital. The doctor there does another ultrasound which shows that both babies are doing okay. It is a relief to be at the hospital, I spend the night there.

Friday, December 1, 2006: The big day. I have to wait as they are just squeezing me in when an OR becomes available, so we have no idea what time the surgery will be at. We wait and wait and wait, time seems to be crawling. I am becoming very discouraged when finally, at 5pm we get the news that an OR is ready for us. Suddenly my heart is racing. At 6pm I am on the operating table. The anesthetist does not give me enough medication and the surgery is painful at first. After receiving more medication I fell asleep. When I come to the doctor is almost done and asks me if I want to see Baby B, it takes all my strength to pry open my eyes (as I am very drugged now) but I catch a glimpse of a precious little angel. Dr. Ryan then drains 4 ½ liters of fluid off Baby B’s sack, this is much to the relief of my internal organs. When the surgery is over I have to be monitored for contractions and given drugs to stop them. Soon I am back in my room and feeling much better now that I can sit up with no pain and actually eat comfortably. I spend another restless night in the hospital. We have to wait and see if the surgery worked.

Saturday, December 2, 2006: Dr. Ryan comes in the morning and performs another ultrasound. He is very pleased, both babies have a good amount of fluid around them and he has a hard time telling which one is which. He looks at blood flow and everything is looking good. Still no signs of brain damage or heart failure. He discharges me from the hospital but I decide to stay at the hotel another day to recover. I was not anxious to get back on a plane. We are so grateful and relieved that the surgery appears to have worked.

Monday, December 4, 2006: I go back to see Dr. Ryan one last time before flying home. He does another ultrasound and the babies look even better. I thank him but he is still cautiously optimistic, he warns me that I am still at high risk for preterm labor. The plane ride home is a lot better.

My beautiful twin girls were born healthy on February 4, 2007, 9 weeks after the surgery that saved their lives. Words cannot express how grateful I am for these 2 little miracles.They were 6 weeks premature, weighing in at 4 lbs. 8 oz. and 4 lbs. 7 oz., but never needed to be on oxygen and were only in the NICU for 13 days. I do not know who was the donor baby and who was the recipient. They continue to amaze me today and now, at almost 10 months, you can hardly tell they were premature. Mike and I are so grateful for the hundreds of prayers and all the help from friends, family and even strangers. I look forward to the future with my 5 beautiful daughters--just hope we make it through those teen years!

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