Here’s my story. It still hurts.
I found out I was pregnant with mono-di twins so I was automatically considered high risk and visiting the perinatologist biweekly. They warned me early in my pregnancy that sometimes twins can have a heart defect so they suggested I go to a cardiologist who can do heart ultrasounds in utero. I decided to go. My appointment was Monday, June 11th.
Well the previous Thursday during one of my ultrasounds at the perinatologist they discovered baby B’s bladder wasn’t filling up, an early indicator of TTTS, but no one was concerned since fluid was evenly distributed between both babies. Fast forward to Monday at the cardiologist, lo and behold I had the same X-ray tech so I jokingly said, hey, maybe baby B’s bladder will be full, and being a sweetheart so decided she would check since she was so close. Well, she checked and told me she’ll be right back. In comes the doctor who suggests I get myself together and come in her office. I was terrified. I was alone because I thought this was going to be a routine check up.
In her office I go and she informs me I am in stage 1 of TTTS and that the children’s hospital of Philadelphia, CHOP, will be contacting me tomorrow and I need to answer and make an appointment within the next two days.
At work Tuesday I received the call and they tell me to come in first thing the following morning. In my husband and I go to CHOP to be informed we will have about seven hours of testing and ultrasounds done. That two-hour ultrasound with zero answers tore me apart. I was asked to rotate sides, have a snack, shake around because she was having a difficult time seeing what she needed to see. Ugh.
After all the testing was done and we were given the option of getting lunch or meeting with the doctor. We opted out of lunch because we just wanted to hear whatever news they had.
The news they had was from Monday to Wednesday my TTTS has changed to level 3, and baby B, my donor baby was brain dead. There was a rush of fluid to baby A and baby Bdidn’t get enough in return. He would have no quality of life and now both babies were in danger of not surviving because my baby A had fluid around his heart and an enlarged liver. What? How could this be? Even the doctor at CHOP was confused how baby B was suffering when he was in stature the bigger of the two, but he was not going to make it. We opted to have surgery the following day to save baby A.
We had the surgery and thought all would be well because we were told this was the only way to save baby A. I was 23 weeks during all of this. Four weeks later baby A decided to make his entrance. We had a long stay in the NICU, but he made it and is now home and making progress.
This whole experience has been the hardest journey, and the main thing that got me through the hardest days was a doctor at CHOP telling me my baby died to save his brother. My heart breaks for my survivor twin because he will always be a twin, and not to mention this would have been the fourth set of twins in our family, all boys. He will always be reminded as will I and my husband.
I hope one day families will not have to make the painstaking decision I had to make or hear the gut wrenching news that made me dizzy and sick. I hope awareness can be raised for this horrible disease and spare these precious twins.
Lisa Sutcliffe, Philadelphia