The Diagnosis

Dr. MFM came into the ultrasound room about ten minutes into the ultrasound, which was really rare.  Usually, he’s like the great and powerful Oz and just watches from behind his green curtain, commenting only after the test is completed.

“You have TTTS.  I’ve called my former colleague in Miami so that you can go down there to see if you can have the surgery no later than Monday morning.”

We asked questions.  I cried.  My husband looked scared.  The ultrasound continued, as they had to give accurate measurements to the hospital and surgeon in Miami.  Dr. MFM came back in and said that because of the situation and severity of the fluid discrepancy, too much for Baby A and almost none for Baby B, they wanted to get me to Miami right away to see if we could have surgery in the morning.

We were told that WITH the surgery, our chances of having one healthy, living baby was 80%.  The chance of both surviving was 50%.  Those didn’t sound like great odds to us.  However, not having the surgery would mean that I would probably have to deliver “two very sick babies” at 26 weeks’ gestation.  The chance of survival for Baby B in particular was low considering the fact that she had lost weight since the previous ultrasound two weeks before, and she now measured more like a 22 week fetus with no visible bladder.

Dr. MFM briefly told us about the procedure.  I would be brought to the operating room, where the surgeon would use an endoscope to go through my belly into my uterus and use a laser to coagulate the blood vessels that the babies shared in the placenta.  That would essentially give the babies each a separate placenta, and it should correct the fluid imbalance and other issues.  If the surgery looked like it wasn’t going to work or if I went into labor, the surgeon would deliver the babies.

We had so many questions.  I think we were just stunned, dumbfounded that we were facing this life or death situation with our two baby girls and that TTTS hadn’t really been mentioned as a possibility in the past two weeks.  Dr. MFM hurried us out of his office, saying that we needed to get in the car and drive straight to Miami.  The surgeon there would tell us more and answer any questions we had.  He told us that he would have called an ambulance, but it would be quicker if we just drove.  There was concern that I would go into labor, because I had such an abundance of fluid.  We were told that we could go home quickly to get some of our things, but we needed to get on the road.  It was almost 1 p.m., and he wanted us to be there by 4 p.m. so I could be assessed that evening by the doctor and his team.

My husband and I left the office and made some important phone calls.  I cried hysterically as I called my parents to tell them, and I asked them to pick up our toddler from the babysitter’s house and take care of him until we returned.  My dad said something in an attempt to comfort me, but I don’t remember what exactly.  I was focused on my husband’s conversation with his own mom.  I listened as his voice cracked with emotion.  I’ve never heard him sound like that before or since.  We called the babysitter and told her what was happening, and let her know to expect my parents to pick up the toddler a bit later.

When we got to our house, we both rushed through to get medications, pajamas, and everything we might need for however long we were there.   Peanut butter and jelly sandwiches were good enough for lunch in the car, accompanied by some baby carrots and water.

The drive to Miami took about three hours.  On the way, I e-mailed my bosses and coworkers and posted a quick post on Facebook that TTTS was confirmed, and we were heading to Miami for surgery.  I also Googled the surgeon who would perform the surgery and found that he was one of the pioneers of the TTTS laser ablation surgery.  The TTTS staging system is called the Quintero staging system, because Dr. Quintero devised it.  Along with apprehension, fear, and sadness, I started to feel a bit of hope that he might be able to save my babies’ lives.

B, one of Dr. Quintero’s team’s nurses, called to give me more specific directions and find out our E.T.A.  She was so helpful and friendly, and I really started to feel like at least we were going in the right direction.

However, the thoughts kept creeping in that if only I had an earlier ultrasound, we might not be in this dire situation right now.  The huge weight gain, the horrible back pain…at least now I knew why I felt so terrible.  I had been to Dr. OB two times, as well as to the hospital two times in the past two weeks.   No one recognized the signs.  Dr. MFM saw me two weeks prior and did not seem concerned about the fluid difference and possibility of TTTS, so how the hell did this happen?  I didn’t have room in my brain to dwell on it, so instead I tried to focus on getting to Miami and through the surgery with two healthy babies still in my belly.

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