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My twin girls are sweet, funny, and somewhat adorable identical twins. We discovered we were having them back in June, 2013, when a lovely ultrasound technician gave us the amazing news that we were the proud parents-to-be of a pair of genetic clones. Twin A, a feisty, active baby, and Twin B, a placid, compliant baby.
I’m not in denial about my control issues. Seriously, everything has a place, I have schedules, and Post-its are my therapy. A twin pregnancy? I can do this. Give me a pen and paper, and I’ll have lists, schedules, and plans drawn in 10 minutes. Piece of cake—or so I thought.
It turns out you can’t control everything…With multiples come complications. I think it’s a proverb or something—If you’re having more than one, then the fun has just begun—or words to that effect.
Technically, they were monochironic, diamniotic twins—the most common form of identical twins, sharing one placenta, but with two very thin internal membranes inside the amniotic sac. There were already small issues that were being dealt with—chronic morning sickness, low blood pressure (Hooray! Modified bed rest!), a shortened cervix (Hooray for internal scaffolding to keep them in!), and a placenta that had implanted at the front and was really low. Seriously, what else could go wrong?
Identical twins run high risks of issues with the placenta, my doctor told me. But “only a 10 percent chance,” he said. “So don’t worry, you won’t get it.” Yeah, right.
At 24 weeks we were given the heartbreaking diagnosis—our twins had developed Twin to Twin Transfusion Syndrome (TTTS). Essentially, one baby had too much fluid around her, and the other had too little (she was literally stuck to the side of my uterus, not growing well and in danger of organ failure). We were sent to a bigger hospital in Leiden, where they specialise in twins.
Our first appointment wasn’t so great. When the diagnosis was confirmed, we spoke with a doctor who offered us the opportunity to be part of a laser surgery trial. As at this stage we were still in shock and needed some time to think about the whole situation, so we declined. We were then told that we should probably make funeral plans for our babies.
Digesting that news on the hour-long drive home was possibly the most devastating thing we’d done to date. We’d already lost a baby in the early stages of pregnancy; now we were going to lose our twins? My head was reeling with all the information that we’d been given. It really just seemed that we were going to lose all our hopes for these babies.
Days of the same routine turned into weeks. On the days we weren’t having scans and checks and doctor’s appointments, we were sitting around imagining the worst. Things slowly improved though, and by the time we hit 28 weeks, we were back to weekly checks. The word “stable” became our mantra—so long as things were stable, things were ok. The fluid levels between the babies were slowing balancing out, but they were still monitoring us—not only for the TTTS, but also for something else, a little known condition called TAPS, or Twin Anaemia Polycythemia Sequence.
TAPS is a relatively new condition—and has only been really identified as a separate condition to TTTS since the early 2000s. Instead of fluid imbalances with the babies, there is almost a “miss-wiring” of the placenta, where one baby passes their red blood cells through a tiny blood vessel to their sibling, making one baby so anaemic her blood is like the consistency of rosé wine, and the other with blood so thick it resembles ketchup.
I could almost tell the day that I was admitted to hospital that something wasn’t quite right. I’d joked with the obstetrician the previous week that perhaps I’d better pack a hospital bag. I’d made it to almost 30 weeks and hadn’t packed a bag, despite the constant threat of being admitted. That week I’d made an attempt to pack a bag…
It wasn’t my usual ultrasound technician, and to be honest, the guy was not really professional. Especially the part where he left a woman who was 7 months pregnant with twins lying on her back on an examination table whilst he disappeared for 15 minutes to “discuss something with a colleague.” The appointment had already taken almost an hour, so my back and my bladder were complaining loudly.
When he returned, the news was pretty grim. They had done the usual readings, and it appeared that my girls had developed TAPS. The readings were off the scale—and not only that, one twin had a shadow on her brain, which could be a sign of a bleed.
I was admitted to hospital immediately and given steroid shots to develop the babies’ lungs. I called my husband at work, and he came with my hospital bag…which contained a book, a toiletry bag, a pair of PJ’s and no underpants or hairbrush. (I told you it was only an attempt!)
Two days later, after regular monitoring and counselling, my room swarmed with doctors with machines and notepads. They checked the position of the placenta (still at the front and low lying!) and marked where the surgeons would go in. Did I mention complications? The epidural didn’t work. Guess who got a spinal block from the boobs down? Me.
Not long after I was wheeled into the operating theatre, the girls were born. Twin A came first—a pasty, pale little goblin, but breathing on her own. She weighed only 1.1 kilograms (2.4 lbs). Next was Twin B, who screamed the house down. She had some breathing issues, was swollen and bloated, and so red she was almost purple from the amount of blood her poor little body was pushing around. She was 1.6 kilograms (3.5 lbs). They were immediately taken to the NICU, whilst I was sent to recovery. A couple of hours later we finally got to see the girls.
My girls are veterans of the NICU. They are survivors—infections, blood transfusions, blood thinners, and breathing problems are only a few of the complications they had. After 7 long weeks, we finally had both girls at home, two tiny babies weighing around 2 kilograms (4.4 pounds) each. Twin A was still pale and constantly monitored for her anaemia, Twin B had lost most of her redness, and both resembled tiny little dolls.
Now, 18 months later, we have two happy, healthy toddlers with a few remaining minor complications. We still see endless doctors and therapists, but their progress is great. As TAPS is only newly researched, their long term prognosis is still unknown, but we regularly get updates on the research conducted.
This whole experience has changed me—I’m a lot less structured, and a lot less rigid in my actions. After all, when you’re dealing with two active toddlers, you can’t be inflexible! But it also taught me that you can’t control everything. Sometimes you just have to accept that you need to take life as it comes, and sometimes it will throw you a curve ball that you just can’t avoid.
[Photo credit to Stephanie Ernst]
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The post Trouble With Twins: Delivering Daughters With TTTS appeared first on youshare.