Report: 01/30/07 visit to UofU Medical Center

We visited the UofU Medical Center in Salt Lake yesterday for a look-see at the twins 7 days ALS (After Laser Surgery). The results? Pretty good, as long as we operate under the assumption that the absence of bad news = good news. Our "regular" doctor (inasmuch as we can use that term: we've seen the same doctor for consecutive visits only once in the last couple of months) wasn't in, so we just had an ultrasound exam conducted to check on the "big three":

- Heart functions
- Deepest pocket
- Signs of preterm labor

HEART FUNCTIONS

Both tickers were, well, ticking right along. The rates were OK: 150-ish for Micah and 160-ish for Spencer.

DEEPEST POCKET

Measuring the "deepest pocket" (the greatest distance between any part of a twin and the nearest placental wall) is an imprecise science at best: the techs are scoping a 3D space with a 2D instrument, and the kiddos are in constant motion. That said, Micah's deepest pocket (DP) was 10-ish cm (slightly larger than last Wednesday) and Spencer's was 2.5-ish (slightly smaller than last Wednesday). On the face of it, this isn't good data. The twins seem to be moving in the wrong directions as we'd like to see Micah's DP decreasing and Spencer's increasing. Again, though, this measurement is tricky to "get right."

Here's an image that helps illustrate what they're looking for when they assess "deepest pocket." This is an image harvested from the 'net, not one of ours. We have lots, but I haven't had time to scan them and post them. I'll get on that... eventually. :-)



SIGNS OF PRETERM LABOR

The scan for indications that labor might be kicking off early yielded OK results. While one indicator pointed in the wrong direction, it wasn't too significantly bad. And the most blatant indicator--steady, regular contractions--is still absent. That's good.

TIMELINE

We'll be back at the U on Friday for another checkup. Calendar-wise, here's what we're up against:

- Twins delivered at 24 weeks have a better-than-fair chance of survival but also a higher-than-comfortable risk of complications (poor eyesight, respiratory and circulatory troubles, brain damage, etc.). We'll hit 24 weeks on February 4th.
- Twins delivered at 28 weeks have an excellent chance of survival and a minimal risk of complications. We'll reach 28 weeks on March 4th.
- Twins delivered at 32 weeks + are in a great place. We'll hit this magic number on April 1st.

Surgery completed, now what?

Hi everyone,

I just typed up a great long paragraph about everything, and was then informed by Seth that he had already updated the blog....he said about everything that I was going to say. Oh well, it was a nice thought.

We will continued to be monitored by the doctors at the UofU until the babies are born, and will most likely deliver there. (our first appointment will be Monday afternoon)

For the next 2-3 weeks (after returning home) I will be on a modified bed rest, because pre-term labor can be triggered by the surgery and not happend until weeks after. Our church relief society will be bringing in meals twice a week (the boys won't eat much of it and they always bring a lot so twice a week should feed Seth and I quite nicely). Along with meals being brought in, Seth's company is paying for us to get some help around the house, so we'll have someone coming in three times a week to help with laundry and heavy cleaning. We also have family in the area, and they have volunteered to help with the boys, so most likely I will have someone over every afternoon. I have also been blessed with wonderful friends, so with Scotty in school and Max in preschool twice a week, I should be able to take things easy and get the reclined rest I'm supposed to. (somewhere between 2 hours morning and evening to all day).

I'd like to just reiterate again how grateful we are for all of your support, prayers and faith in behalf of our little ones and our family. We feel extremely blessed and loved, and have faith that things will continue to go well.

Follow-up report on surgery

Melissa is out of the hospital and resting at her parents' home in Sacramento. She'll fly home on Saturday afternoon. Here's the scoop on our follow-up visits with specialists at UCSF yesterday prior to Melissa's discharge.

The general ultrasound revealed that the pocket of fluid around Spencer (the donor twin) has more than doubled since the surgery (1.4 cm to something over 3.0). Further, his bladder was visible. That's good since ultrasound only picks up the bladder if there's fluid inside. Dehydration and malnutrition are Spencer's most dangerous enemies, and he seems to be in good shape on both fronts as of the moment.

We later underwent a fetal EKG, and both babies' hearts seem fine. They're pumping as they ought (both in terms of rhythm and volume). Micah's ventricle walls are still thicker than we'd like, but that's to be expected: the overloading condition that caused them to thicken in the first place could only have improved starting yesterday. Here's an analogy to explain what's going on:

- Suppose that the average human heart works at a level equivalent to "curling" a 5 lbs. barbell constantly with one arm.
- The TTS condition placed a greater load on Micah's heart--something like swapping that 5 lbs. barbell for a 10 lbs. model. As one would expect, the muscle involved grew bigger and stronger. If you're talking about an arm, that's OK. If you're talking about the heart, not so much: flexibility is preferable to raw power where the heart is concerned.
- Yesterday's procedure returned the load on his heart to a more normal level--analogous to swapping back to the 5 lbs. barbell. Since the heart is still moving a load (albeit a smaller one), its return to normal size will be gradual in the same way that the arm would gradually return to pre-10 lbs. size.

The specialists indicated that we might consider having fetal MRI done on Micah to see if we can learn whether he sustained brain damage during the brief slowdown in his heart-rate (see post below). Since the purpose of this exercise would be informational rather than actionable (i.e. the outcomes wouldn't inform any treatment or preparatory steps by the doctors, they'd only help us prepare emotionally), we're likely going to pass over this opportunity. We'll take him any whichaway.

The lead surgeon visited us just before we checked out to express that he was very pleased with the procedure and its apparent outcomes. He feels that the odds of both babies surviving has improved from 10% (given no treatment) to 80%. Better!

Thanks for your thoughts, your help, and your well-wishes. Melissa's surgery on Tuesday went as well as we could have hoped. The doctors were able to see what they needed to see and zapped one large vein-vein connection and a few smaller ones.

There seems to have been an immediate positive effect on the "donor" twin (Spencer). He appeared better-hydrated even while Melissa was still on the table. We're cautiously optimistic.

The only complication in the procedure seems to have been that the recipient's (Micah's) heart-rate slowed to 50-75 bpm (down from 130-150 standard) for a few minutes (less than five). Some degree of brain damage might have resulted, but that's far from certain.

Otherwise, all's pretty well. It seems as though the procedure didn't trigger preterm labor. Melissa is resting comfortably. (Very comfortably: they drew off TWO LITRES [or LITERS, for those of you on this side of the pond] of fluid... between four and six pounds'-worth: yikes!).

M should be released from the hospital in the afternoon Wednesday, provided that the follow-up exams show good things. I'm catching a late flight back this evening and will see y'all bright and early tomorrow AM. Melissa will fly home on Saturday or Monday next.

Again, thanks for everything. We couldn't do it without y'all.

What did the docs say?

Hi everyone,

Sorry for the delayed update, but here it is in all of its glory.

The main tidbit of news is that I will be going in for surgery at 4:00 p.m. on Tuesday, January 23 (tomorrow). After 5+ hours of tests/consultations this seems to be the best option for us.

I spent 2 1/2 hours doing ultrasounds Friday morning (talk about uncomfortable!). They did a regular ultrasound on both babies (complete measurements to determine size, weight, due date comparison), and then the ultrasound specialist (whom we later found out is one of the best in the world) came and did the specialized ultrasound for those babies with TTTS (measuring pockets of fluid, looking at the heart, the bladders, doing doppler on the umbilical cords, and a complete look at the placenta to determine if there were any artery to artery connections). The results of the ultrasound showed that the recipients fluids had gone up, the donors fluids had gone down (below 2 this time), and the donors bladder was barely visible (meaning fluids were way down, and dehydration could start setting in. Also during the ultrasound it was determined that there were no artery to artery connections. The reason why this was important to know is because in a small sub-set of twins with TTTS if they have A -to-A connections, then the amnio-reductions seems to help things balance out, and even stop being a problem, so after 2-3 amnios, the TTTS seems to go away. The last thing noted was that my cervix is a little short (an indication of my body getting closer to going into labor-something not unusual with all of everything I'm carrying around- but not good)

Right after the ultrasound (read that walk directly to the next office, do not pass go, do not stop for lunch) we had our appointment for the fetal echo-cardiogram, which is basically another way to say a "glorified ultra-sound focusing on the hearts of the babies". Again, talk about uncomfortable (a lady who feels like she is 8 1/2 months pregnant can only lie on her back in one position for so long). Going on; the results of this test indicated that the donor baby's heart is perfectly fine so far, but the recipient's heart was starting to show some warning signs. The cardiologist told us that the heart itself is doing great, pumping, holding, releasing fluid the way it is supposed to, no defects to be seen. However, the walls of the ventricals (the things that bring into, and take out of the heart) are starting to thicken (not a good thing).

Given all of these things put together, along with the fact that I am already out here, the fetal surgeon recommended that we go ahead with the surgery. It so happened that our consensus agreed with his.

Here are the things we learned so far about the surgery itself. They will most likely give me an epidural, and (I'm guessing) sedate me after that. They don't want to put me completely under because that is more dangerous for both me and the babies. After which they will stick a "needle" the size of a pencil into my abdomen, and into the sack of the recipient baby (more fluid, easier to move around etc.) It is realy important that the amniotic fluid at this point is clear, not murkey or foggy, because they then thread a microscopic camera into the needle, and into me, through which they find all of the veins and arteries that are being shared by the babies. The way doctor Lee put it (the fetal surgeon) they look "back and forth, back and forth, back and forth" between the two little ones. After they have done this for a long time, they "map"(?) the placenta, and determine exactly where and what they will cut/cauterize/sever using a microscopic laser. They then proceed to cut/cauterize/sever each vein and artery they think the two are sharing. The hopeful outcome of all of this is that since the two are no longer sharing anything, they will each receive the right amount of and nutrients that allows them to grow and progress without getting too much, or too little. And then, if that happens, the hope is that Mom's body will be able to hold onto them long enough that when the time comes for them to be born they will be big enough, and strong enough, and developed enough that they will survive (hopefully without any more complications).

I will be kept overnight in the hospital, and released either Wednesday or Thursday depending on things go. After I am released I will go back to Sacramento with my mom where I will recuperate for another day or two before being able to fly home to my family.

Seth is flying out tonight (monday) to join me, and will stay with me until Wednesday evening, where he gets to fly home, and take care of the boys....again. I think he probably has gotten the worst of things this past week. The boys have been sick, so he has been playing Mommy and Daddy, and trying to work (which hasn't happened very well) and taking care of sick kids, while I've been here in CA lying around relaxing and letting my mom and brothers take care of me. I'm truly appreciative of all of his sacrifices in behalf of our family. His Mom will be staying with the boys in Logan while he is gone. We felt like routine is important for them right now, plus Scotty is in school, so we are very grateful to her for doing that. My brother Aaron and his wife Stephanie, who live in Logan, have also been a great help to us-watching the boys when needed and shuttling Scotty to and from school each day. the boys just love them, and their little Mckensey, so knowing that my boys have family that loves them around, while I am not, has given me a lot of peace.

I guess that is it up to this point. We'll try to let everyone know how things go on Tuesday, but I can't make any promises as to when! Thank you again for you prayers and support, it means much to all of us!

Learn about TTTS services at UCSF

You can learn more about the center Melissa will visit tomorrow here...

The UCSF Fetal Medicine Website

Melissa by the Bay

Melissa took an afternoon flight to San Francisco today and will meet with specialists at UCSF tomorrow. It sounds like she'll have a full day of medical fun. Her ticket out was of the one-way variety--something I never thought I'd experience in our marriage. It isn't a good feeling. :-) But it does give us flexibility to adapt to whatever the docs tell her tomorrow. If they recommend that she undergoes the fetalscopic laser procedure immediately, she can delay her return accordingly. If they recommend no action at this point, she can come home on Saturday or Sunday.

We'll post a full report after M's exams tomorrow.

Just another thought

One of the good things about all of these ultrasounds is how often I get to see my two little ones. Micah (recipient twin) loves moving around, and makes it very hard to get any measurements on him. I won't be surprised if ends up a swimmer! Today I poked him and told him to be nice to the technician...he started kicking me back. Because Spencer hasn't had as much room to roam (see today's update), he moves more to change position than to move just for movements sake. Today however he was getting in on the act of teasing the technician too. Today was the first time I really saw them being close to each other, and seeming to interact. I think that they are two little boys who love each other as much as we love them! Even knowing the reason for each ultrasound has not robbed me of the joy of seeing my little ones in action!

happy news!

Hi everyone,

I had another appointment this morning (meaning another drive down to Salt Lake City....I guess I should get used to those!) Each appointment basically consists of doing a detailed ultrasound, paying specific attention to their hearts, their bladders, trying to measure the amount of fluid in each sac, and doing a doppler (measurement of blood flow) of their cords.

Today things still looked good with each of their little hard-working bodies, and the fluid measurement was actually improved! Spencer (the donor twin) had a pocket of fluid (they measure the deepest pocket of fluid they can find) of 3-4, instead of the 2, 2.5 it was last week. This technically means that they don't have TTTS because by definition one baby has to have a measurement of more that 8, (Micah's fluid measured 13-16 today) and the other less than 2. However, I am still very full of fluid, so although at this point they aren't as concerned with the babies health (and all of this can change rapidly), pre-term labor is still a very real concern (basically I'm as big as someone 8 1/2 months along and that can be confusing to my body).

After talking to our doctors, we are holding off on the amnio-reduction, and continuing monitoring.

After today's encouraging news, we called the specialists in San Francisco, who, after reviewing all of my records, and talking to one of our doctors, still recommend that I fly out there for a consultation. The reasons they gave for this include the likelyhood of things going downhill since we still have a ways to go before reaching the safety zone, the possibility that even with an increase in Spencer's fluid their hearts are still being affected, and their greater ability to evaluate the placenta to determine if amnio reduction would work, or if the laser surgery would be better.

We find out tomorrow if they were able to make an appointment for me on Friday, in which case I will be flying out to San Francisco to meet with them this weekend. If not, I will go down to Salt Lake this week, and go out there sometime next week.

Thank you everyone for your thoughts, your prayers, your faith, and your love. We truly appreciate it!

We have the facts, now what?

Hello all,

It looks like Seth has overwhelmed you all with information, somewhat necessary in this situation since it isn't something that is commonly known about, Although we have a friend that told us of his friend that went through the same thing with their twins just recently, so I guess the world isn't that small after all.

After reviewing all of the information, my guess is people want to know what we are going to do, and how we are doing. I'll answer the second question first, we are doing remarkably well. We have been blessed with a sense of well-being and peace from the very start. Seth and I both have great hopes for these two boys of ours. After a priesthood blessing we feel assured that the boys will survive at least until time of delivery,, and after that, things will continue according to the will of our Heavenly Father. About 8-25% of survivors of TTTS develop physical or mental disabilities depending on treatment. We are hoping for completely healthy boys, obviously, but would love them, do love them, no matter what.

After talking to numerous doctors, looking at numerous web-sites, and seeking guidance, here are the choices we have made thus far, and why.

No treatment has been started yet, because it is not yet necessary.
After reviewing our choices, we have decided to pursue the fetalscopic laser surgery option because:

- Studies show it is more effective
- We have what is called "chronic" TTTS, or early onset TTTS. With amnioreduction the goal is to slow down the process of TTTS until the babies are far enough along to deliver safely. With at least 7 weeks to go, the number of amnioreductions needed goes up, and the chances for complications also goes up. The chances of making the laser surgery option obsolete also goes up. We don't want to risk that.
Our doctors pointed out, and it makes sense, that we talk to the specialists, the surgeons who actually perform the laser surgery and do a consultation with them-before any treatment is necessary, before it becomes an emergency. I don't know if Seth has mentioned in previous entries or not, but this treatment is only performed (by those with the experience of 50 or more surgeries per location under their belt) in about 6 places total around the United States. Because of its location and proximity to my family, we have decided to consult with the fetal surgeons in San Francisco.

Upcoming events:

- Appointment on Tuesday down at the University of Utah Medical Center (our "local" or home base of operations)
- Hopefully, an appointment in San Fransisco sometime this week for a consultation (assuming everything is still going well on Tuesday)

This week's forecast

A quick note to tell y'all what we're up to this week:

- On Tuesday, we'll visit with Dr. Aagaard and/or Dr. Holmgren at the University of Utah Medical Center. They've become our principal care practitioners (we think). (The revolving door of doctors we've experienced over the last couple of weeks is another story entirely.)
- Depending on the results of Tuesday's exams, Melissa will make a visit to the University of California San Francisco Medical Center for a consultation on fetalscopic laser surgery. If things are as they were last week, we doubt they'll advise us to have the surgery right away, but our medical team here encouraged us to have the consultation now (while the situation isn't critical) so that we're as educated and prepared as we can be when and if it becomes critical down the road. It's always better to be making a decision of this kind from a position of sober preparedness than one of hectic, under-advised panic.

How we stand as of Friday, January 12th

It occurred to Melissa that we should indicate where we stand as of now in light of all of the info we've provided in general below. Here's the scoop:

- Our twins are roughly the same size right now. Spencer (the donor) is something like ten grams lighter than Micah (the recipient)--not a big difference. This is good.
- Both twins measure within a week of appropriate developmental size and weight given their age: 21 weeks +/_ a week. This is very good.
- Both twins have fluid in their bladders. This is great, especially for Spencer. As the donor, he's likely to suffer from dehydration at some point, but he isn't now.

Taken together, all of this means that we're currently sitting as a Stage I case of TTS. Here are some quick definitions of the five stages of TTS (again borrowed from the good folks at the Cincinnati Fetal Care Center):

Stage I: polyhydraminos in the recipient, severe oligohydraminos in donor but urine visible within the bladder in the donor
Stage II: polyhydraminos in the recipient, a stuck donor, urine not visible within the donor's bladder
Stage III: polyhydraminos and oligohydraminos as well as critically abnormal Dopplers (at least one of absent or reverse end diastolic flow in the umbilical artery, reverse flow in the ductus venosus or pulsatile umbilical venous flow) with or without urine visualized within the donor's bladder
Stage IV: presence of ascites or frank hydrops (fluid collection in two or more cavities) in either donor or recipient
Stage V: demise of either fetus.

Here's another go at the five stages, in English this time:

Stage I: More amniotic fluid around the recipient than the donor. Urine in the donor's bladder.
Stage II: More amniotic fluid around the recipient than the donor. The donor is stuck against the chorionic wall because the recipient's amniotic sac is so large. No urine in the donor's bladder.
Stage III: Amniotic fluid imbalance is severe. Doppler imaging of the fetus' umbelical cords indicates that blood-flow isn't normal for one or the other or both. Maybe urine in the donor's bladder, maybe not.
Stage IV: Fluid has collected somewhere it shouldn't in one or both twins. Usually, this means fluid around the heart of the recipient or fluid on the brain of either or both twins.
Stage V: One twin or the other has passed away.

We've been stable at Stage I since Tuesday of last week--the "best case scenario" given that the twins have the condition at all. Doctors have stressed to us that twins don't usually "progress" through the stages serially; that is, they don't usually move from 1 to 2 to 3 and so forth. They can jump around at seeming random and "skip" stages in the midst. Changes between stages can happen overnight, but typically take 72 hours or so.

Treatment options

So there are essentially two active treatment options for TTS; that is to say, two medical procedures one can elect if one decides not to simply let nature take its course. Again, the odds of twin mortality attached to the "let it run" approach are terribly high: 90%+. From our perspective, that's not acceptable when other options exist. Please note that the descriptions of treatments provided below are far from comprehensive and may even be inaccurate in some respects. As with everything else in this blog, we're just laying out what we've learned (we think) in a stream-of-consciousness sort of way.

TREATMENT OPTION 1: Amnioreduction (or serial amnioreduction, which is a fancy way of saying "amnioreduction lots of times")

Amnioreduction is the (relatively) straightforward process of using an extra-large needle to draw amniotic fluid out of the recipient twin's amniotic sac. It's essentially a "treat the symptoms" approach. In the short run, amnioreduction has the effects of (1) probably making mom more comfortable and (2) possibly giving the donor twin more elbow room and reducing the cardiac workload on the recipient twin. In the long run, it sometimes resolves the TTS entirely. No-one is sure why or how, medically speaking.

If, after amnioreduction, the amniotic fluid imbalance does not return, well and good. If, on the other hand, it does recur, additional amnioreductions can be done.

TREATMENT OPTION 2: Fetalscopic laser surgery

Fetalscopic laser surgery is the rather more complicated process of inserting an arthroscopic laser probe into the uterus and cauterizing ("zapping," to put it crudely) some of the blood vessel interconnections between the twins in the placenta. This is a "treat the root causes, as far as we know or understand them" approach to treatment. The intent is to solve the imbalance once and for all--and sometimes, it works. How often is a matter of discussion and debate in the scientific community.

INTERACTIONS BETWEEN TREATMENTS, or IMPLICATIONS OF ONE TREATMENT FOR THE OTHER

Is it possible to undergo both treatments? Potentially. Here's how we understand it:

- Amnioreduction is the less radical (and that's a loaded word, I know) of the two treatments; it's typically doctors' first recommendation because it can be done at nearly any neonatal treatment facility. For example, it can be done at five or six locations in Utah alone. Risks of procedural complications are pretty low because the procedure itself is minimally invasive and complex. But the complication that can result is critical. In the process of amnioreduction, doctors can inadvertently perforate the membrane(s) between the twins, so-called "septostomy." There's some speculation in the literature that this may actually be a good thing in and of itself and that unintentional septostomy is responsible for the "success cases" attributed to amnioreduction. It also means, however, that the laser surgery option is off the table from the moment septostomy occurs.
- Fetalscopic laser surgery is newer, more complex, and more invasive. It may also be more effective. The results of an extensive European study seem to indicate that it hikes the odds of infant survival significantly vs. amnioreduction. More on that later.

ODDS OF SUCCESS

This is where we cross over into the Realm of Significant Uncertainty. The success rates for both treatments are far from settled questions. Here are some odds we've run across in various places. I know they're contradictory to some extent.

- One doctor told us that, with either treatment, we've 60% odds of both twins surviving and 80% odds of at least one twin making it through. You'll find similar odds listed on various Internet sites (including the Wikipedia entry on TTS, I think).
- Another doctor (one of the laser surgeons we've consulted) says that, of couples he admits to his clinic, 33% leave with both babies, 33% leave with one, and 33% leave without either.
- Other doctors point to the major European study mentioned earlier. You can find data about this on the 'net, too. They indicate that the study showed 20-30% better odds of infant survival connected with fetalscopic laser surgery vs. serial amnioreduction.

So the odds are all over the board. I've sort of filed them all away under two major conclusions: (1) the odds aren't stellar no matter how you slice them, and (2) treatment is better than no treatment.

Introduction to TTS (or TTTS)

Melissa pointed out to me that Twin-to-Twin Transfusion Syndrome is more typically abbreviated "TTTS" than "TTS." I've seen both, though, and prefer the latter. Our keyboard will last longer if we're economical with our "T's."

The purpose of this post is to introduce TTS. Rather than reinvent the wheel, we'll point you to a few established Internet sites on the subject and simply add our commentary. This is a good place to start:

http://www.tttsfoundation.org/what%20is%20ttts.html

If you don't have time to read the full page, here's a brief intro:

Identical twins share a single placenta. Virtually all share blood vessels (veins and arteries) in the placenta. Usually, these interconnections aren't a problem. TTS is a "disease" of the placenta (interesting word-choice, but it's found across all of the 'net sites I could find on the subject, so it must be the right one) that results in the twins sharing the placenta unequally. One twin, called the "donor twin," sends along most of the blood (and thus the nutrients) available there to the other, called the "recipient." In our case, Spencer is the donor and Micah the recipient.

Possible results of the blood-sharing imbalance are these:

- Unequal distribution of amniotic fluid and, as a result, available space in mom's tummy. In our case it's about an 80-20 split. Micah lounges in an Olympic pool while Spencer is making do with a wading puddle. It's for this reason that the "donor" twin is sometimes also called the "stuck" twin: he's pressed against the wall in more or less the same place regardless of how Melissa is positioned. The recipient moves about in response to gravity when Melissa shifts, responding to gravity.
- The donor twin can wind up undernourished and dehydrated.
- The recipient twin can suffer congestive heart failure as his heart works harder than usual to manage the excess bloodflow through his body and fluid accumulates around his heart.


Left unreated, TTS poses a tremendous risk of mortality for one or both twins. You'll find a range of numbers out there; the stat we've seen most often indicates that there's a 90% chance of both twins passing away in utero without treatment. With treatment, the odds improve. They're still not stellar, but they're better. More about this when we explain the treatment options later.

I borrowed the image at right from the Fetal Care Center of Cincinnatti's excellent website about one of the treatment options. It's found at http://www.fetalcarecenter.org/medicine/fetal-surgery/surgery-ttts.htm.

Welcome to "Micah & Spencer"

Hello family, friends, and other interested folks. We (Seth and Melissa Johnson) have created this blog as a home base for information about our impending twins, Micah and Spencer.

We've kids already (three energetic boys) and haven't blogged about their prenatal experiences, but the level of interest in these two has been a tad higher than normal. First, because they're twins: there's a novelty factor involved. Second, because there's a complication afoot.

About a week ago, we learned that Micah and Spencer are affected by "Twin-to-Twin Transfusion Syndrome," sometimes also called simply "Twin Transfusion Syndrome" or TTS. The last few days have been incredibly hectic, a little confusing, and pretty scary. We've learned an awful lot about TTS--or at least what's known about TTS. And that's not much, frankly. The doctors we've consulted with to this point have told us that that scientific literature is more than a little thin in this area. Why? For several reasons:

- TTS isn't terribly common. About one-in-ten pairs of monochorionic, biamniotic identical twins are affected. (Here's that last sentence in English, for those of you more versed in that language than science-ese: "About 10% of all identical twin-pairs who share a single chorionic sac but have their own amniotic sacs are affected.")
- It's difficult to design and conduct good studies on TTS. There aren't many cases to involve in the study anyway, and randomizing treatment to those cases that researchers can track down is understandably a sticky wicket.
- Neither of the treatment options out there is scintellatingly effective. More about this later.

In the next several entries, we'll bring you up to date on what has happened so far. Both Melissa and I will make entries to this blog, so you'll notice some variation in the writing style. We'll make entries when we can, but we can't promise anything like a regular posting schedule. Entries will vary in nature from informational to just plain emotional. Feel free to respond to posts as a way to communicate with us about our kiddos. You can also call or email, but we'll be variously contactable (not much) over the next few months, I think.