How I became a mom, Part 3

Part 1 and Part 2 are below.

That evening, things got a little better. My husband had found the website for the TTTS Foundation and emailed them. Mary from the foundation called me and discussed my diagnosis. She explained exactly what was going on and what I could do to help my babies. Basically my babies were connected through their shared placenta. One was taking all of the blood and nutrients from the other. This was bad for both babies, because the “donor” who was giving all of the blood to the “recipient” was likely to be undernourished. The “recipient” was getting too much for her little heart to deal with and was subject to heart failure. Furthermore, the recipient who was getting so much blood and nourishment would urinate more, creating too much amniotic fluid, putting the bag of waters at risk of rupturing. The donor¸ who was not receiving enough nutrition was not urinating, and had very little amniotic fluid, also a dangerous situation.

Mary told me that I needed to be on bed rest, so that as much of my blood as possible was going to my babies, and to drink Ensure, to give my babies extra protein. She also discussed treatment options with me. The only two realistic options were amniotic fluid reductions and in-utero laser surgery. The laser surgery basically blasted away all of the connections that the babies shared so that they could no longer send nutrients back and forth. This was considered experimental by many, in fact my peri considered the whole concept ridiculous, and I did not know if my insurance would cover it. Also it is only performed in four hospitals in the US, none anywhere near me. The second option was amniotic fluid reductions. It is the same thing as an amniocentesis, in which a long needle is inserted into the belly and through the uterus, except that much more fluid is drawn off. This basically only treats one of the symptoms of TTTS, not the cause as is the case of the laser surgery. Both treatments had similar outcomes, although the amniotic fluid reductions could be done almost anywhere. Mary also recommended that I have weekly ultrasounds to monitor the changes in my babies, since things could progress very quickly.

That night I saw my OB and he confirmed the grim statistics that I had already discovered. He admitted that he had not seen a case of TTTS with a positive outcome and told me that it was now in God’s hands. I appreciated his honesty. He did not know much about the laser surgery, but promised to look into it and to support me in whatever treatment option I choose. He sent me home from the hospital that night, on bed rest, knowing that I needed to be with my family now, and fearing that I would have many days ahead of me in the hospital.

The next day I contacted one of the surgeons who performed the laser surgery. He repeated much of the information I had already heard from Mary. He told me what to watch for and what to ask my doctors to determine the severity of my condition. When I saw my peri the next time I tried to ask him those questions and discuss treatment options. He told me that fluid reductions were the only option he would consider and did not answer my questions. He also did not think weekly ultrasounds were necessary, despite the fact that there had been significant change between the last two appointments. I immediately resolved to find a new peri.

I contacted the surgeon once again and he put me in touch with a local peri that he had worked with in the past. She was wonderful. She was a mom of twins herself and had a much better understanding of what I was going through. She sat down and explained everything to me as my previous peri had not done. She also told me that our goal would be to get to 35 weeks. It is rare for TTTS babies to make it to term because it is often safer for them to be delivered early than to remain inside the womb. Once we hit 28 weeks, when the babies would have a good chance of survival, she would monitor whether the babies were better off inside or out. Of course there was always the chance that my membranes would rupture from the extra fluid.

I had an ultrasound that day, and she immediately called the laser surgeon to discuss the results. Together they determined that I did not yet need treatment, but that I would have weekly monitoring and it could become a possibility in the future. Meanwhile I contacted my insurance about paying for the surgery, should it become necessary. They had already assigned me a caseworker, since I had been hospitalized so many times, and she began gathering data about the surgery. It would have to go before a board to be approved.

The next week I saw my peri again. Things had changed the “recipient’ had way too much fluid, and it could start causing problems. My peri and the surgeon decided to go ahead with an amniotic fluid reduction. Since discordant fluid was the only symptom I was currently showing, it seemed the most logical route. I thought they would bring me back the next day for the fluid reduction, but she was going to do it right then, in her office.

I had never had an amniocentesis before because I had been too scared. Now I had no choice and no time to prepare. I laid on my back with my belly poking in the air as the doctor swabbed it with iodine. Then came the biggest needle I had ever seen. I had had plenty of experience with needles at this point, but I was terrified of this one. When she inserted the needle I only felt a little prick as it when through the skin. But when it went through my uterus, I started contracting. It was only a mild contraction, a reaction to the needle, and it was over quickly, although there would be more to come throughout the procedure. The doctor drew the fluid out with a giant syringe, and then dumped it into a big plastic bottle, over and over again. Lying flat on my back I started to get dizzy. The doctor and her assistant had to roll me over and my husband shoved towels under my back, all while the needle was still sticking out of my belly. Finally after 20 minutes it was over. A few light contractions, but that was all. No big deal. The doctor wanted to see me again by the end of the week to make sure my fluid levels had not gone back up.

I ended up having three more fluid reductions over the next few weeks, at one time drawing out more than a half gallon of fluid. My doctor stayed in close contact with the surgeon, but they never determined that the laser surgery was necessary. Fortunately mine was a milder case of TTTS, and my girls never showed and heart problems or great growth discordance. Only the fluid was a problem, and it was treated by simply removing the excess. At 35 weeks into my pregnancy, my TTTS symptoms started to disappear. That magical 35 weeks, our original goal for delivering healthy babies, and it now looked like we were going to surpass it.

As it turned out, I went to 39 weeks, before I was finally induced. After all the worry and the bedrest, it seemed that my girls were perfectly happy where they were. My OB tried to start labor by breaking my bag of waters, that which had been so at risk for breaking on its own, which had been over-inflated and deflated again like a child’s balloon, which had been pricked over and over during the amniocentesis. The only problem was that my membranes wouldn’t rupture. I guess they had to have been made of tough stuff to have survived all they had already been through, and after several minutes of some discomfort, my OB finally gave up. Instead they started me on pitocin to start contractions. Every hour they raised the dose, but my contractions were neither hard nor productive.

After about 6 hours my OB tried to break the bag of waters again, finally success! I began to have steady contractions that were finally becoming painful. I held off getting an epidural because I didn’t want to slow down my labor. Finally after an hour the pain was intense and I wanted relief. The nurse called for the epidural without doing a cervical check, and by the time it was in, I was feeling real pressure. The nurse did a check and found I was at a 10 and ready to go. What’s more, one of the babies’ heart rates was dropping. I have never seen people move so fast.

They rushed me to an OR, where they delivered all twins. About two minutes and three pushes later, TT was out. I found out later that the doctor had used forceps to help pull her out because of her dropping heart rate. She was pale, but she cried soon, and after receiving fluids for a couple of hours, she was perfectly healthy. I didn’t have much time to think about her because SS was right on her heels.

We knew that SS was breech. The doctor was going to try to turn her around after I delivered TT. He called for the assistance of one of his associates, but before he could even get the words out, there was SS, feet first. And there I had my two beautiful little miracles. After a long physically and emotionally draining pregnancy, I had the easiest delivery that I could have wished for, and two beautiful, perfectly healthy babies.