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.

Early September

On Wednesday, September 4, 2014, I had an appointment with Dr. MFM for an ultrasound.  Everything looked ok, except for the babies’ fluid levels.  Normally, the MVP (maximum vertical pocket) of fluid is between 2 and 8.  Baby A had 9 something, and Baby B had 4 something.  I was 24 weeks and 1 day along.  Dr. MFM came in and said that the fluid discrepancy could be the result of Twin-to-Twin Transfusion Syndrome, but he would have me back in about two weeks for a follow-up ultrasound.  I wasn’t too concerned, because he didn’t seem to be.

The next day, I took one of my first pregnancy pictures.  I felt like my belly finally “popped” so I didn’t just look fat, I looked pregnant.  As the days went by, I just felt huge, and I was having trouble feeling the babies move.

On Monday, September 8, 2014, I called Dr. OB because I wasn’t feeling the babies move as much as I usually did.  He sent me to Labor and Delivery at the local hospital, where they hooked me up to the monitors for a non-stress test (which measures the fetal heart rates).  The heart rates looked fine, so I was cleared to leave.  Before I left, the doctor on call came by, stood at the end of the bed, and literally spent 5 seconds asking if anything else was wrong.  He didn’t shake my hand or offer sympathy or any other words of encouragement.  I couldn’t believe how little interaction he had with me when I had concerns about my babies.  We’re still fighting the bill for that visit.

The next day, Tuesday, September 9, 2014, I went to see Dr. OB. My fundal height (uterus) measurement was 40.  Typically, that number corresponds to the number of weeks pregnant you are, although with a twin pregnancy, it’s common to measure 8 weeks ahead.  I was still not quite 25 weeks, so 33 should have been the maximum amount.  I was in pain and feeling so much pressure, and Dr. OB reasoned that it was because I was measuring full-term.  He reiterated that the babies’ heart rates looked fine at the hospital and I probably felt less movement because the babies shifted positions.  He did not want to minimize my feelings if I felt something was wrong, so he said he would order an ultrasound for me if I wanted one.  I said that I trusted his judgment and if everything else looked fine, he was probably right that they just shifted.  I would give anything to go back to that day and demand the ultrasound.

As that week went on, the pain in my tummy and back increased so that I was constantly in pain.  I had difficulty completing assignments for work.  I drank a lot of water and tried to rest as much as possible.  On the plus side, I passed my glucose test!

On Tuesday, September 16, 2014, I visited Dr. OB again.  I was measuring 43, and I had gained 5 pounds in a week (which is significant, as I had lost weight initially and was only a pound over my pre-pregnancy weight).  He prescribed a maternity belt and some muscle relaxers to help alleviate my back pain.  He also wrote another note for work so that I would only be working half-days for the remainder of the pregnancy.  I immediately went to a medical supply store and got the maternity belt.  It seemed to help for a little bit, but I was so uncomfortable and had such a hard time sitting with the computer on my lap to do work.

On Wednesday, September 17, 2014, at 26 weeks pregnant, I really had a hard time feeling my babies move.  I could only feel Baby A; Baby B was just silent.  I called Dr. OB, who sent me to Labor and Delivery again.  When I was hooked up to the monitors for the non-stress test, they discovered that I was having contractions.  I was not dilated, thankfully.  An ultrasound was ordered, and the babies did not pass the test, because Baby A had a pocket of fluid that measured 16, and Baby B had very little measurable fluid.  Baby B also was not yet showing signs of breathing, which could be normal depending on the situation, and she had no visible bladder.  I was admitted to the hospital, and one of the nurses said that I might be there until I delivered.  I was so upset, in part because I rarely spent a night away from my sweet toddler, and I couldn’t imagine spending 8-12 weeks away from him.  I also had no idea what was going on with the babies, and whether this was TTTS or not.  Dr. OB came in around 6 p.m., and the first thing he said was, “Don’t freak out.”

“Have we met?  Of course I’m freaking out!”

He explained that the hospital’s ultrasound machines weren’t that great, so it might look like there’s an issue and there isn’t.  He wanted me to stay overnight for monitoring and be discharged in the morning to see Dr. MFM for a high-level ultrasound, because Dr. MFM doesn’t come to the hospital to see patients.  Dr. OB surmised that I should be able to be on bed rest at home for the rest of the pregnancy if Dr. MFM agreed that was the right course of action.  He did mention that if this was TTTS, Dr. MFM would be able to send me to the surgeon in Miami who performs the TTTS surgery.  I would have no answers until going to Dr. MFM the following day, so I had no choice but to wait.  My parents, husband, and toddler came to visit, and I told a few friends where I was and why.  Mostly, I was so stressed out that my babies might not be ok.  Baby B was way up in my right ribs, and Baby A was free-floating around in the rest of the space.

My husband’s company was having a welcome lunch the following day where they were to meet some of the executives from the home office overseas (the company had recently been purchased by an international company).  I told him to go ahead to work, because I didn’t want him to miss too many more days and not have time available when the babies were born.  Luckily, he did not listen to me.  He came to the hospital in the morning after dropping the toddler off with the babysitter, and we waited to hear when our appointment with Dr. MFM would be.

I was discharged from the hospital to see Dr. MFM at 11:30 a.m.  We were nowhere near as nervous as we should have been going into the office.

To read about the rest of our TTTS journey, click here.

Well, Hello There!

In 2014, I found out I was pregnant with monochorionic-diamniotic (“mo-di”) twins.  Monochorionic twins share a placenta and are definitely identical.  The twin news was a shock, to say the very least.  Twins do not run in my family (and I have since learned that identical twins have nothing to do with heredity — it’s just like you won the baby lottery and got a bonus baby!), and we were kind of shaky about having one more kid, let alone two!

We quickly found out that mo-di pregnancies can come with a host of issues, as the babies share a placenta (they have separate amniotic sacs), and accordingly, their blood flows back and forth between each other through the placenta.  We were told that around 15% of mo-di pregnancies can develop Twin-to-Twin Transfusion Syndrome, or TTTS, and that we would be monitored with ultrasounds to keep a close eye on the babies.

In September, we received our TTTS diagnosis, went to Miami for intrauterine surgery to correct the condition, and waited patiently for our girls to arrive.  Until they were born, we thought that the only possible issues we would face were kidney issues in our donor twin.  When our baby B was born, we were told that she has microcephaly and brain damage as a result of the TTTS.  Her kidneys are monitored monthly, and we do not yet know if she will require dialysis or a kidney transplant.  Baby A does not have any issues of which we are aware.

Life is unfair, as we all know; but seeing what our baby B could and should look like and be is our constant, heartbreaking reminder of everything we went through.  She’s still beautiful, and she’s still amazing, but she will face so many challenges that her twin will never know.

This blog is my way of sharing our story about our journey and our new normal.  I will go back to some of those toughest days and share the present days’ stories as well.  I am not a medical professional, and this blog is not meant to share any medical advice.  Although I am an attorney, this blog is also not meant to impart any legal advice or create any attorney-client relationships.