Mono-Mono Twins – an Update

A very long time ago I wrote a post about what mono-mono twins are. But now that I’m almost a year and a half in I’ve come to appreciate my healthy pregnancy and delivery that much more.

Basics – Mono-mono stands for monoamniotic monochorionic and it means that you have identical twins that share a placenta AND share an amniotic sac. Aside from conjoined, this is the rarest and most dangerous type of twin pregnancy. Less than 1% of twins are mono-mono or momo. Identical twins can develop four different ways (1) diff sac, diff placenta, (2) diff sac, same placenta, called modi twins, (3) same sac, same placenta, called momo twins, and (4) conjoined. In utero it’s impossible to tell if type 1 twins are identical or fraternal, because all fraternal twins develop in diff sacs with diff placentas. Some parents get DNA tests after birth to confirm. The other three types are always identical. 

The dangers with this type of pregnancy involve the umbilical cord. Anyone who has been pregnant knows that baby likes to move around a lot. When there are two babies and two cords, there is a very high risk of cord compression or cord entanglement. Survival rates are 50% for momo twins.

So the above information was what I was given or learned on the day of my first ultrasound, when my husband and I found out that we were expecting two. Scary, right?

But I had a 100% healthy pregnancy. Very little nausea, normal weight gain (exact same weight gain as my singleton), low blood pressure, no swelling of my legs or feet, no gestational diabetes (which always shocked docs because I’m a big girl). Besides a high pulse (no one knew why and nothing was done as it was deemed not a risk) everyone was perfect. The girls always measured larger than what an average singleton would weigh at the same gestational age, they were always close in weight – so there was no unequal sharing of the placenta, another risk. So despite the odds, I always felt positive and never felt that I was worrying too much. 

Fast forward to a few of months ago when I joined an online support group for families of mono-mono twins. This is a worldwide group of about 2.5k (and growing)members. At least three-five times a week I read a post where a mom shares that her twins no longer have heartbeats. From 12 weeks in all the way to 21 weeks. It is absolutely devastating to read these posts. They all seem to happen the same way – the mom is at her ultrasound and is told, quite simply, there no more heartbeats. Her babies did not make it. That’s it. 

Viability, or the age at which the average baby can live outside the womb, is 24 weeks. For me, I only had standard ultrasounds until I hit that point. Then I had to drive in for fetal monitoring every day. Most other women in the US are admitted into the hospital between 21-24 weeks for continuous monitoring. But up until that point, nothing can really be done. 

I’ve also seen some very tangled umbilical cords. Many times I’ve read about moms whose doctors have never dealt with this type of pregnancy and so document the entire birth. So it’s become common for moms to share pictures of their babies’ knotted cords following birth. 

I never saw my girls’ cord, nor did my husband. In fact, it was never mentioned once, not during the 9 weeks of monitoring or the delivery. It’s been gnawing at me ever since I begin seeing cord photos online. So a couple of weeks ago I stopped by the medical records office at my maternity hospital. It was quite shocking how no one in the office knew what I was talking about. I was there to find out any information I could about my girls’ cords. I was left with a promise that someone higher up would look into it and get back to me.

Needless to say, I didn’t have much hope of that actually happening. So color me surprised when a big giant manila envelope arrived in the mail today. 

What I deduced, after poring over all the medical records was that my girls’ cords were not entangled, nor compressed. There are no mentions of knots anywhere. 

Frankly, that’s quite miraculous. 

But I did find something (okay two things) that were unnerving. 

The first was that I was administered pitocin after the c-section. I guess this makes sense – the docs need the uterus to contract and push all that yucky birth stuff out. But I was surprised that I didn’t know this was happening or that it wasn’t mentioned. Being numbed from the chest down I guess they felt no reason to tell me. 

But the other thing I learned was far far scarier. When Baby A was delivered, (my jellybean, Elanor) her umbilical was wrapped around her neck twice. 

The girls came one week early because Baby B (my sweetness, Arietta) was having decels (heart rate dipping) during a monitoring session. If that didn’t happen, would Ella have made it another full week? Would that cord entanglement have been found during a later monitoring session? Would it have been caught in time to prevent complication? Because of the unique nature of this type of twin, if one passes in utero, the other dies too. 

I have two beautiful and healthy baby girls. They are about to turn 18-months old, 16 adjusted. I will never shake these new what ifs, but now I can truly appreciate that these are my miracle babies. 

I have now been made an admin for this  Momo-Twin support group. I, along with two other women (one from the U.K. And one from Australia) monitor and provide support for the other moms on the page. It’s been a freeing thing to share my experiences and my fears with these new and seasoned moms (and some dads and grandmas).  While I do have a supportive group of friends and family, none of them can really share in my appreciation for these girls surviving and thriving as they did. 

I’m loving this new ‘job’ and the people that I meet, especially knowing that I can be the supportive ear for some other momma in need. 


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