TTTS (Twin to Twin Transfusion Syndrome) Awareness Month

Today marks the beginning of International TTTS Awareness Month. Each December, the TTTS Foundation seeks to promote awareness of TTTS and provide support for the families who are struggling with the diagnosis.

Twin to Twin Transfusion Syndrome (known as TTTS) is a condition unique to monochorionic twin pregnancies. During a twin pregnancy, there are several factors which contribute to the risk of TTTS. First, the babies must share a single placenta. Fraternal (dizygotic) twins will always have separate placentas (although the two placentas can fuse together) and care not at risk of developing TTTS. Identical (monozygotic) twins can have separate placentas as well (up to 30% of identical twins do have separate placentas) and many doctors will mistakenly diagnosis these pairs as being fraternal twins.

The most common scenario is for identical twins to share a placenta but each baby remains in its own separate amniotic sac. This is called monochorionic/diamniotic (mo/di) because the babies share a chorion (the outer layer of sac) but are separated by an inner dividing membrane-the amnion. The most dangerous scenario is twins who are monochorionic/monoamniotic (or mo/mo) because these twins are inside the same amniotic sac and are at risk of umbilical cord entanglement. Fortunately, mo/mo twins are rare-only around 1% of twins present this way. More commonly, the identical twins are mo/di and these twins are at risk of developing TTTS.

(My belly at 35 weeks pregnant with the first set of twins)

TTTS is a disease of the placenta in which there are abnormal blood vessels which connect the umbilical cords of each baby, enabling them to "share" blood. When the "sharing" becomes unequal, one baby receives too much blood flow and the other does not receive enough. The baby who does not receive enough is known as the "donor" and the baby receiving too much is the "recipient." Obviously, this type of unequal blood flow can harm both babies if left untreated.

There are two different types of TTTS. The most serious type is chronic TTTS, which occurs between 12 and 26 weeks gestation, before the babies are big enough to be born. The second type is acute TTTS which occurs later in pregnancy, or even during labor. Acute TTTS can be resolved with immediate delivery of the babies but chronic TTTS can require treatments such as laser surgery to separate the connecting blood vessels.

TTTS can strike any monochorionic twin pregnancy without warning. Of all monochorionic twin pregnancies, about 15% will go on to develop TTTS. There are about 4,500 cases of TTTS in the US each year.

(Sarah & Leila, just a couple of hours old)

When Leila and Sarah were born in 2006, I had no idea what TTTS was or even whether they were at risk for it. Because I didn't have an ultrasound until 22 weeks (that was when I found out I was carrying twins!) it was impossible to tell whether the girls shared a placenta or whether two single placentas had fused. There is a narrow window of time in which doctors are able to easily tell whether twins are monochorionic by looking for that thin dividing membrane and this is quite early in pregnancy. I was well past that point and the girls were big and crowded inside me, making it impossible for anyone to know whether they were monochorionic.

It wasn't until after their birth that we knew something was wrong. I had wonderful midwives present for the birth and Leila and Sarah were born on the floor of my bedroom. There were no complications other than a loop of cord in front of Leila's head that had to be pushed aside and Sarah's hand trying to come out before her head. The girls were both 7 lbs, 6 oz and healthy. However, acute TTTS had struck sometime in my final days (or hours) of pregnancy.

Because of the unequal blood sharing, the recipient baby in a TTTS case becomes overloaded by the extra blood and suffer from heart failure. The donor suffers from lack of nutrients and poor growth. There are warning signs such as discordant growth and discordant amniotic fluid levels. Doctors also look at the way the umbilical cords are attached to the placenta and how many vessels are in the cords.

One of my girls had a single umbilical artery but there were no other factors to indicate TTTS was developing. After their birth their pediatrician was alarmed at hoe red Sarah's skin looked. Blood tests revealed that Sarah was polycythemic as a result of acute TTTS and that left her skin red for months. Leila (the donor) was anemic and looked pale and thin in comparison to her twin. There were no lasting effects of the TTTS and we were blessed that everything turned out just fine.

(My ginormous belly just days before Nathan & Ryan were born)

With my next pregnancy, I suspected right away that I carrying twins again. Everyone assured me that I was crazy, and I tried to believe them. Finally, I went for an ultrasound at 9 weeks and found out that I was indeed carrying a second set of twins. On top of that news, I learned that they were also monochorionic twins.

I ended up seeing the same OB for backup care that I had seen with the girls. He was very knowledgeable about TTTS and was amazed that I was carrying a second set of identical twins. Because the odds of having two sets of identical twins were already high, he assured me that the odds of having two sets of twins with TTTS would be astronomical. Indeed, when I consulted with a leading expert in TTTS research, he also reassured me that it would be almost unheard of to develop TTTS again. He knew of only 2 cases of that happening.

And then, in an incredible twist of fate, TTTS struck again. After a long pregnancy full of conservative monitoring, acute TTTS reared its ugly head. This time, things were different. And scary.

Just days from my due date, I started to have an incredible pain in my groin/hip/leg. I thought for sure that it was a baby pressing on a nerve and tried everything to fix it. When all failed, I ended up in the hospital. A recent ultrasound (notoriously inaccurate in the third trimester) showed that both babies were the same size and were big and healthy. Despite the ultrasound results, things were not well. There was a significant growth discordance and Baby B was in distress. When they were watching me overnight, Baby B's heart rate tanked. His heart rate had been having slow decels down to the 70s & 80s, but suddenly it dropped to 50 and then disappeared. That was it. They put me out and I had an emergency cesarean. When I woke up I had no idea what had happened.

(Nathan & Ryan at a few days old)

Ryan (Baby B, my donor) was resuscitated at birth and was thin and pale, but healthy. He weighed 6 lbs, 6 oz. Nathan (my recipient) was 7lbs, 9 oz and was red and plump. Examination of the placenta revealed an unequal sharing and Ryan's umbilical cord had been small and thin.

That is the scary part of TTTS. It can strike anyone and can come on without warning. Close monitoring is important, but having an educated care provider is key. I can't even tell you how many mothers of twins have told me that their doctor said their twins can't be identical because they have separate amniotic sacs. The TTTS Foundation distributes a (free) wonderful handbook for parents and their care providers that will tell you everything you need to know about TTTS.

I consider myself extremely blessed to have my six sweet children. I know that many cases of TTTS are severe and end in the loss of one, or both, babies. The TTTS Foundation is working to stop this through raising awareness of TTTS risk factors and treatments. I'm fortunate to have two healthy sets of TTTS survivors, but many families are not so lucky.

You can help the TTTS Foundation by making a donation or by drawing attention to TTTS. Blog about it, tweet about it, talk about it!

Sleep Is NOT Overrated

What do I do at 2 am when I should be sleeping?
I write poetry of course.
Ok, not usually. But last week I did.
And here's what I wrote...

Will I ever be able to sleep again?
The answer is "no," I'm sure.
How much more of the crying and screaming,
Must this tired mom endure?
They scream in their cribs,
They cry in my bed,
They cause a throbbing pain in my head.
Those babies carry on,
For most of the night.
And I wonder if it will ever be alright?
I want my sleep.
I need it too.
What is a mother of twins to do?

I'm obviously not a poet. In all fairness, this was written in the foggy haze of my sleep-deprived brain in the middle of the night. It was a rough night and both babies had woken up crying in their cribs. Then they cried in my bed with me. And that continued all night. The next day the big kids all had colds and runny noses. Maybe it was related... I'm not sure. But I do know that I was so exhausted that I was grumpy and short with the kids that morning and I hated it.
Sleep is definitely not overrated. I feel more human when I get some decent sleep at night. I am more optismistic and ready to tackle anything. I just need to get these sweet babies on board with the whole sleeping at night bit.

In general, the babies sleep pretty well now. We have a few nights when I feel like I'll never get another night of uninterrupted sleep again. The truth is, I'd rather be woken up fifteen times a night and have these two sweet babies here with me than to sleep 8 hours straight. Totally worth it.

Two weeks ago I finally had the babies make the transition into their cribs. Of course this was before I decided to move again.
But for now, these guys are sleeping (sometimes through the night!) in their own room. Nathan usually sleeps all night without waking but Ryan usually wakes around 4 am and wants to nurse. I just bring him into bed with me and he goes back to sleep. I miss having them in my bed but I'm sleeping so much better now.
I've realized that I'm a much more patient mom when I have gotten a few good hours of sleep. I was staying up late every night and then nursing babies all night before waking up early in the morning. That could be why I had mastitis twice in the last 2 months!
So I made the decision to start night weaning the babies, even though they're just 17 months old. The girls were 21 or 22 months old (and I was pregnant with the babies) before they were night weaned and I remember feeling terrified of trying to transition them to sleeping in their own room. I couldn't have done it without Jason's help. He spent the first two weeks comforting the girls and getting them back to sleep without nursing. Of course I don't have Jason here to help this time so I was even more reluctant to change anything.
Besides, I love having my babies in my bed. It just feels so right to me.
I just wish I could figure out how to night wean and still cosleep. I know it can be done but I don't know how to do it myself. I think the girls would still be nursing at night if Jason hadn't stepped in and helped.
Do any of you cosleep with toddlers? Do they still nurse at night? Have you nightweaned and still shared a bed? Any tips for me?
P.S.- I have realized now that a) I take entirely too many pictures of my kids sleeping and b) I don't ever want to fall asleep first in this house because someone will take a picture of me wearing a wig or something.

I Was Delirious

I woke up the other day with a painful lump under my armpit. I was in a rush to get the kids out the door for a field trip we had planned for the local homeschooling group. I should have known what was coming, but I was too busy to see it until it was too late.

By the time I returned home from our field trip, my breast ached and it was very painful to nurse the babies. I knew by then that I had a plugged milk duct. I've had them many times before. Usually I can get them to go away very quickly but sometimes they persist and I develop mastitis. And this time that's exactly what happened.

Within minutes, I started to feel dizzy and ill. Next came the rapidly rising fever. I ushered the children back upstairs from the basement where we were doing school lessons. By the time I got everyone upstairs and sat down, the room was spinning and my head was throbbing. I remember talking to a friend on the phone but can't remember exactly what I said. I was confused and sick.

I took my temperature that afternoon and it was 105.5 degrees. I didn't even know that your body temperature could go that high without killing you! I thought for sure that I was going to die. I became delirious, crying out for Jason. The kids tore into the cabinets, fixing snacks and helping themselves as I lay crumpled on the couch. My nephew came over and kept the children under control so that I could rest. I don't know if I actually slept at all or just writhed in agony the whole time. I nursed babies on the infected breast constantly, trying desperately to unclog that duct.

I am starting to feel a bit better now, but still have a golf ball-sized lump near my armpit. My fever is gone but I still feel weak, shaky, and sore. Because of my experience working with so many other breastfeeding moms, as well as my own experience in the past, I'm confident that things will clear up on their own. Either that or my boob will just rot off.

All it takes is one day of illness to wipe out my New Year's resolutions. No shower, no time for myself, and certainly no running. That should just about do it! I didn't even make it through the month of January. Can I get a do-over?
I made the executive decision to hire a "mommy's helper" finally. I am still hoping to get respite care from the military, but in the meantime I am going to use some of Jason's extra combat pay to hire 2 teenage girls to help me. One will come on Monday afternoons for 4 hours and one will come on Thursday afternoons for 4 hours. I'm paying them $10/hr to help out while I'm here working (and hopefully taking a shower.) Is that a reasonable rate? These are teen girls from our local homeschooling group and I am not sure what the going rate is since I've never hired a babysitter before.

I've got my fingers crossed that we get some good news next week. As of right now, we still don't have a tenant for our house in Georgia. The current tenants are moving out in a few days so I'm starting to get nervous! I am so not cut out to be a landlord. My sanity can't handle it.
Have you checked out my Get Clean review? I extended the giveaway for these awesome products because I was on my deathbed the day the giveaway was supposed to end. If you haven't already, leave a comment for a chance to win!

Also, I recently read the greatest book about twins. If you have twins, are a twin, know twins, or just want to learn more about twins, you should read One and the Same. I can't say enough good things about it! I'm going to let everyone in my family read it. This book made me think about things that had never even crossed my mind when it comes to identical twins.

After reading One and the Same, I was even more curious about the research behind identical twinning. A lot of people ask me about the odds of having 2 sets of identical twins. My own family has wondered how on earth it happened. Heck, I ask myself that everyday! I emailed the author of the book, Abby Pogrebin, and she emailed an expert and asked him for me. What he said can be read on her blog, but basically this was his answer: If you have 2 sets of identical twins it's most likely that one set is not identical (not the case with us), the mother did IVF (not me!), or it's just a big coincidence. Yep, that's my kids-the big coincidence!

I'm going to go try to get this golf ball out of my boob. Here's hoping that everyone has a great weekend!