How do we prepare for a surgical decision on Thursday?

What is selective intrauterine growth restriction?

Monochorionic twins are twins that share a single placenta. Selective intrauterine growth restriction (sIUGR) occurs when there is unequal placental sharing which leads to suboptimal growth of one twin. In cases of sIUGR, the estimated fetal weight of the smaller, growth-restricted twin usually falls below the 10th percentile. This will usually result in more than a 25 percent weight difference between the twins.

sIUGR is estimated to occur in approximately 10 percent of monochorionic twin pregnancies. There are three types of sIUGR that are determined by the blood flow pattern in the umbilical artery of the growth-restricted twin.

Review of sIUGR Type 3 (our diagnosis)

• Unpredictable pattern of intermittent blood flow in the umbilical artery of the growth-restricted twin (forward, absent or reversal). In other words, only occasionally is the blood flow in the artery absent or flowing in a reverse direction. This type of blood-flow pattern is unique to monochorionic twins with sIUGR. It occurs when large arterio-arterial connections are present, allowing shared blood to flow back and forth between the twins.
• Average age at delivery is 30 weeks gestation
• In up to 15 percent of cases, the growth-restricted twin may not survive, which can also impact the neurodevelopment of the normally growing twin.
• Whether or not the condition will change or worsen during pregnancy is difficult to predict from the ultrasound images. Babies with type 3 sIUGR are born, on average, during the 30th to 32nd week of pregnancy. Their overall survival rate is 80 percent.

Selective cord occlusion: This procedure may be offered if you have monochorionic twins with Type 2 or Type 3 sIUGR. Selective cord occlusion is a minimally invasive procedure that stops blood flow to the growth-restricted twin. The goal is to optimize the outcome for the normally growing twin. The procedure can be performed using bipolar cord coagulation, interstitial laser, or microwave ablation. Fetoscopic laser photocoagulation: In select cases this minimally invasive surgery can be used to laser ablate (seal) blood vessels that are shared between the babies. Similar to selective cord occlusion, the goal of therapy is to optimize the outcome for the normally growing twin.
Delivery: If sIUGR is discovered later in the pregnancy or the condition progresses after the pregnancy reaches its 24th to 26th week, delivery of the babies may be the best option.
How is selective intrauterine growth restriction (sIUGR) treated after birth?
Most babies with sIUGR are born prematurely, but our goal will be to prolong your pregnancy for as long as possible.

I’ll say again, these words are so sterile and clinical but they mean choosing a car seat and a casket, or two caskets. In real life, these words are heart rending to the woman carrying these babies, seeing them on ultrasound with all of their fingers and toes, ears and lips, fully formed, approx. 10 inches long, occasionally sucking their thumbs or touching each other. They are already little people. They are my babies and I want to hold them, see them grow, hear them giggle, kiss their owies and hear them say “all better.”

The most painful of research

Instead, I’m researching the rules and regulations of burying stillborn babies. Some people will ask why I’m even looking at this information now. It is fact that I will deliver my twins on the same day. What is unknown is whether they both will be alive, stillborn, or one in each condition. I certainly do not want to go into my appointment on Thursday, have emergency surgery, and then have to give final resting instructions with no information, under duress and likely the influence of medications. So, I am researching.

In addition, I’ve chosen to name them because they need names. If we bury them, they need a service, caskets, headstones, and a gravesite. If we cremate, they need urns and other arrangements. I’ve learned that state law dictates how remains are handled. In most states after 24 weeks gestation, they must be buried or cremated. I am horrified at the thought that these tiny, perfectly formed little babies could be treated any differently at 20, 21, 22, 23 weeks. Certainly, at 20 weeks remains of fully formed babies are not medical waste to be burned in some hospital incinerator – not my babies. This is what people facing this horrible set of complications of mono/di twins do. They do their best to prepare for the unthinkable.

No gifts, no registry – we’ll wait until they’re delivered

Why? Let me explain. Last month, I received adorable baby gifts from a treasured family member. I dragged my feet for days opening the package. While they are adorable, and I called and expressed my thanks, it was bittersweet to touch these tiny onsies, wraps, and hats. I dragged my feet for another week or so deciding if I should cut the tags off and launder them to be ready for babies to come home from a hospital or not. I finally decided I couldn’t bear shipping them back, should bad or worse happen. So, I cut off the tags, feeling rather numb, laundered them, folded them and put them in a clean storage container sitting in my room awaiting the nursery to be put together. Since 1/26 when our sIUGR diagnosis began to worsen according to the data, I lose the ability to breathe every time I walk by it. I think, “what would I do if we had car seats and a pule of gifts we had to return?” Make my husband lug our dead babies’ car seats and boxes to UPS? It would be unbearable on top of unbearable. So it’s decided. No gifts, the registry is on hold. We’ll worry about clothes, gifts, and car seats after they’re delivered when we know for sure what is needed.

How do we manage from here?

Life has taken on a surreal duality: half of it is on hold and half must go on. Daily tasks feel like they betray the severity of our situation, but tasks like grocery shopping, ongoing reno decisions, bringing in the mail, paying bills, etc all must go on. Having acknowledged that, half my heart is on hold until Josh and Daniel get here. There simply is no peace until they arrive, God willing, between 26 (mid-March) and 32 weeks (April 24, 2021).