Before They Came Home-- a narrative of the pregnancy

(in reverse order,  the way I entered it every few days)

10/21/00 Julie’s home, and there seems to be no time, since she’s recovering and needs to not move too much, and I also need to commute two hours each day back and forth to the ICU nursery. Fortunately while Julie was in the hospital Julie’s Mom Carol and her sister Laura and baby Jody were here, helping. Anyway, here are some quick impressions: Max is more awake and curious and often has a worried expression on his face; Eli is bigger and calmer; and they both look completely different every day-- so much so that I had a paranoid moment where I needed to check a numeric tag to make sure that the baby I was looking at was Max. They’re both sucking down mother’s milk, so maybe they can get those gavage tubes removed from their noses soon. We think of them as being "at the beach" for the last few days. They’re under very bright lights, wearing eyeshades, for the phototherapy. We are getting better at checking their temp, changing diapers amidst the wire and tube tangles, and feeding them. It’s a joy to feed them and see them enjoy their respite from the beach, able to use their eyes.

Max appears to be more fiesty, but we’ve already read in the twin books that it’s important not to label them. It’s hard to help though, when identical twins come out so differently because their experiences in the womb were so different! I can’t help but remember that Max had to give up so much when he was a full-time blood donor to Eli.

10/18/00 Can’t believe this is the third day since they arrived. It seems like a week. Julie’s recovering quickly despite a lack of sleep: clearly, hospitals are the worst place to get some rest. But the twins are being expertly cared for up on the sixth floor ICU. They’re starting them on a feeding protocol—being born at barely 35 weeks, and small from the TTTS, mean they have to take them along a gradual introduction to liquid food vs. IV. Also they’ll need phototherapy for correcting their biliruben, as they break down an extra amount of red blood cells often associated with prematurity.

The monitoring is fantastic. A bright LED cuff on one foot shows O2 levels in the blood and heart rate, another sensor shows respiration, and another ECG data. All of which spike up when their ham-handed Dad reaches in through the ports in the isolette to change a diaper within the tangle of wires and tubes.

We’ve had some wonderful times holding them. At first, only Max would interact with eye contact, and Eli just slept—which was unexpected, since Max was smaller, but now Eli’s on it as well. As all of you who are parents know, and I’m learning, just looking at their sleeping faces is a joy.

They’ve told us they’ll probably keep them in there for two weeks if everything goes OK. They "graduate" when they can deal with food and show growth from it and maintain their own temperature. Julie can go home officially on Friday, but we’ll probably get an extra room there for a few days to keep her close for feedings.

Some of you have asked if you can come by. We’d LOVE to show them off, but the ICU is much too delicate a place and they frown on any visitors but relatives (and they make you quite paranoid with all the scrubbing down rules). So, the time’ll be when we bring them home and settle in. We’ll post that info up here too.

They’re here! Our children are here!!

The baby formerly known as Al is now Eli Newton Richmond, 4 lbs 8 oz.

The baby formerly known as Bud is now Maxwell Wolfe Richmond, 3 lbs 13 oz.

Both Mom and babIES are doing fine, and father is in a sweet haze.

Pictures soon to come, but here’s the scoop: Julie went into severe contractions just after midnight, and we drove in around 1am… didn’t listen to the doc on the phone who said to take a half hour and see if they subsided. Once we got there, they just got stronger and as frequent as every minute and finally we got to see the doc at 4am who said, all right, she’s in labor, might as well do the C section now. So they whisked us away and an hour later it was all done, two babies plucked out.

Both Eli and Max were crying and kicking and got 7,8 and 7,9 on their apgar scores (I think), and looked fine to me (my experience is exactly nil however). They were taken away to the ICU because of how small they were, but I just got back from up there, and they said they were both vigorous and doing well, but need to be monitored. Neither on O₂, but both getting fed intravenously.

Julie was amazing, a trouper through the confusion before the decision, and both of us joking with the doctors through the delivery. I saw it all, doc up to her elbow inside Julie plucking them out.

[Later: pic of Julie smiling upon seeing one of the twins for the first time without using ultrasound.  Click to enlarge:]

I haven’t slept, and I can’t believe it all, so I’ll tell more of this later.

Quick update: Wednesday’s NST showed them both normal, though Bud appeared to be asleep during most of it. We gave him some cranberry juice, processed slightly by Julie, which woke him up enough to start kicking. I still can’t get over how the NST room sounds. There are usually two or more women in there, behind curtains, who each are having multiple babies that are being monitored by the NST machines, which amplify audio from the babies’ heartbeats, movements, and the contractions of the mother. So from several directions you hear loud, rhythmic, underwater pulsations that seem exactly like a pod of growing alien blobs in a science fiction movie. I’ll try to record it, hopefully, at our last NST next Monday, and put it on this site.

Dr Sorenson didn’t bother with an ultrasound this time… seems like she feels things are right on track for the C-section on the 19^th. Again she was very complimentary about a part of Julie’s anatomy that seems very strong: "I wish that everyone had your cervix." Being a guy, no way I’m going to comment.

We’re certainly counting the minutes: Julie, wanting to get them the heck out because of the discomfort and forced down-time; me, measuring my last few minutes of no responsibility! Julie’s having more little contraction episodes, so we’re keeping our fingers crossed to make it past today, my 50^th birthday, and all the way to next week, so all our birthdays are at least a week apart.

Next update 10/16.

The date has been changed to 10/19—looks like too many other people thought 10/20/2000 was a good number. Is this a harbinger of crowding in our children’s age group from now on? Doesn’t matter; we’ll be happy if we get to that date.

10/4/00

They’re small but they’re stayin’ in! That’s the summary of today’s news—first full-measurement ultrasound that we’ve had in 19 days (a long time for this pregnancy), at 33.3 weeks. Their weights are equal at 3 lbs 10 oz, which puts them at the 4^th percentile. Very small, but all other factors looked good: their amniotic sacs are a little closer together in volume, their umbilical blood flow is good, and they’re moving around. It’s interesting that Bud has now caught up with Al.

Based on all this, Dr Sorenson is scheduling the C-section date for October 20! That’ll be well into the 35^th week, which is great, since 36 is the average for twins. They’ll check their lungs with an amnio at that time and figure out whether to give them a drug to help finalize lung development for the air-world.

We’ve set up two more appointments before then to see if they’re still doing OK. Not full ultrasounds, just NSTs. What we need to concentrate on now is keeping them healthy inside Julie, and growing as much as they can, so that the docs don’t move up the birth date. The longer they stay inside now, as long as they’re still growing, the better they’ll do. Also 10/20/2000 has a nice mathematical ring to it.

Next update is probably October 10’s NST.

9/27/00

We just completed today’s NST and ultrasound. The Non-Stress Test is supposed to show how non-stressed they are by low-enough heartrates and good movements. They put a microphone above each twin to listen to their heartbeats, their movements and Mom's contractions. No question that these guys were non-stressed. The nurse said they were "very good, very reactive," and it was clear they were moving like crazy. I had to laugh at one point, because their intense gymnastics made an embarrassingly long and loud rubbing noise, like an amplified squeegie on a windshield.

Doctor Sorenson said it was interesting how their heartbeats seemed to change in unison, but that's probably because they each had to relax after each bout of fighting. During the ultrasound she said they looked great, and though she said she wasn’t qualified to measure their amniotic sacs in detail, it was clear to her they each had enough fluid. Only Al could be seen "breathing", as before, but it’s still a little early for that test.

The bottom line: we go in next Wednesday to fine-tune the scheduling of the C-Section. At that time, Julie will be into her 34^th week. If they schedule it out to 35, or even 36, it will be a relief. I.e,. a relief in that the danger will be less for the twins, but certainly not a relief for Julie, for whom doing nothing, being nauseous, and staying horizontal is not very fun.

Watch and wait; we’re not out of the woods yet.

That sums up the situation after yesterday’s ultrasound. Their weight percentiles have dropped slightly - now 14% for Al and 5% for Bud. Their weights are 3 lbs and 2 lbs 12 oz. That pushes the docs to recommend taking them out early, maybe two weeks from now or earlier. Al’s amniotic fluid is now slightly below the normal range, and Bud’s is at the highest number in the normal range—which is the opposite of the original TTTS, but not nearly as severe.

We just have to wait and see. We are trying to be optimistic. We don’t want to lose sight of the fact that this is such an exciting time in our lives, that we are about to meet our children, and that we will love them unconditionally. And, at least Al has made it into the 3’s of weight. We wonder if we’re being too microscopic about this, reacting to too much information with too little predictive power, though that type of concentration came in handy in July.

In any case, those of you reading this, please keep up the good visualizations! We need that energy.

Julie is now officially on bed rest but at least it’s at home and not at the hospital for now, which means cutting off the dog walks and letting go of all preparations. The doc was very direct on that score: "There’s nothing that needs to be done now. Nothing! Taking care of the kids is your only job."

Ultrasounds will now be weekly or even more often, and we’ll keep updating this.

9/9/00

8/24/00

Whew! A great ultrasound today: both babies’ amniotic sacs are normal and almost exactly equal; their hearts are good; the discrepancies we worried about are within normal range; and their weights are increasing well. They’re still both small for their "age", 2 lbs 4 oz for Al and 1 lb 15 oz for Bud, but their growth is normal for the interval measured. Julie’s weight has increased and I think she looks great. All the docs were very pleased.

It’s truly amazing that the TTTS seems to be completely cured. A week ago, when we had an interim quick check done, Al had less amniotic fluid than Bud, and the doc said sometimes TTTS reverses! That shocked us and we protested that their placental transfusion channel had been disconnected by the laser surgery. The doc said, "That’s not an exact science," and we left worried. But today’s results indicate that Kypros really was exact. And he had the help of all of your good thoughts for us.

We ran into Dr. Souter, who was Kypros’ assistant in London. She said after his method, often their growth rate slows down at the end and they have to be taken out at 30 or so weeks. That’s a little scary: that would be in less than 3 weeks. But we feel hopeful about keeping them going longer.

We saw Bud’s face at one point—very handsome nose and cheekbones (only a parent could say that about an ultrasound!). Al’s profile looked good also as he, according to the sonographer, chewed. The big question now is, what was he chewing on? Julie says with all the gum she goes through, some of it was bound to find its way into an amniotic sac.

8/14/00

Sorry this took a little while, but here’s the latest news. The ultrasound showed two healthy babies. The docs were very happy, and we would be too, but we’re in extreme paranoia mode now, and there were a few discrepancies they said should be watched, like Al’s growth has slowed down. Conversly, Bud is catching up. This wasn’t predicted by Kypros in London, so we’re wondering. We’ve emailed him for his opinion.

On the other hand, their amniotic sacs are now almost equal; they’re kicking around like crazy; and they say a mother’s nausea is a really good sign. Also, our Dr. Sorenson was extremely pleased and thought we shouldn’t worry, so we’re trying our best at that, and the next ultrasound is August 24^th.

8/5/00

Some of you have been saying, "What’s going on? You never update that website!" So…

No news is good news in this case. Julie’s feeling pretty good aside from the continuing nausea: still not gaining weight, as a matter of fact is losing some. But the twins seem good, because they’re kicking away madly inside. There are eight arms and legs moving about. And as Ken Boynton pointed out, with two boys, there are two additional members stirring around for a grand total of ten. We also figured out that not only does Julie have a penis, but she has two. What a woman.

The real update should be this Thursday August 10^th, after the next ultrasound. What we’re looking for is weight increase on both twins, as they consume Julie in their dual-minded attempt to propogate their father’s chromosones at any expense.

7/26/00 5:20p

YAY! A big WHEW! from the two-hour ultrasound appointment today. Both Al and Bud (they call them Baby A and B) look normal! Bud’s bladder looks normal-sized, instead of being completely invisible a week ago; he’s swimming in his own amniotic sac, instead of it being plastered to him a week ago; and Al has a more normal amniotic sac, instead of the giant bloated one a week ago from being the recipient. The sonographer took a long time to check out the doppler flow on Al’s heart—for the best of reasons, because he was so active he kept messing up the view. The doctor later even made a special notation in his report about how active they were (Julie’s genes, clearly).

They didn’t say anything bad about Al’s heart, and we pushed him, so it must be OK. Umbilical flows looked good too. Their weights are different, a discrepancy of 20%, because of the syndrome having gone on as long as it did, but Al’s OK for his age, and Bud’ll catch up once they come out (knock wood).

The doctor even congratulated us for being aggressive and taking action and was very curious, as were a few other people, as to how the whole thing was done. We told the story several times. It made us feel good about the whole crazy period we’ve just been through. Aside from this appointment being a long and uncomfortable time for Julie, I think we’re both feeling very good right now. WHEW^2!

Next report in two weeks. By the way, for some reason Julie won’t let us really name them Al and Bud.

7/23/00 9pm Seattle time

Back home, and so glad to be here. Deepest thanks to our friends and family for concentrating on us—it’s definitely helping: no after-effects from the operation, Julie’s felt good despite the super long day, and the twins seem to be kicking away. Still can’t believe that less than a week ago we were only talking about this operation and now we’re already back from doing it in London! Julie sure has been through a lot… makes the rest of the pregnancy look like a walk in Hyde Park. I wish we had our own portable ultrasound, or maybe a screen mounted on Julie’s belly so we could watch the twins anytime we wanted, but I guess she’s already carrying around enough. We’ll get a professional ultrasound Wednesday afternoon and will update this site afterwards.

7/22/00 9:15pm

A pretty good day, except that Julie had some abdominal pains through the night and into morning. She felt a lot better after a nap—maybe the rigors of jet lag. But the greatest thing is that she thinks she felt both babies kick, from separate places. It was impossible before, because the big one was surrounded by so much fluid, and the small one couldn’t move within its sac. So far so good!

We went to Greenwich by boat after our noon nap. My GPS said that the Royal Observatory is wrong about where the hemispheres divide by 150’ or so. I pointed it out to a few people who just gave me blank looks. Anyway, it was nice to think about other things a little.

Next update hopefully not until next Friday, when we should get another ultrasound. Tomorrow we fly back.

7/21/00 8:25pm

WHEW!!! Both babies are alive!! And the bladder is reappearing on the donor—finally he can get fluid again! So far, the op was a complete success!!

We’d been on pins and needles all day, as are probably all of you reading this, and it was made longer by a mistaken two hour wait in the hospital. When we finally saw Prof N, he said he was telling his staff, what is it with those Americans? He was clearly overbooked anyway, but the crowd of people patiently waiting for help had subdued our normal pushy impulse to go around the receptionist.

Anyway, he put Julie on the table and we held our breaths. We had no idea whether either one was still alive. Then, when he found first one and then another beating heart, the parents’ hearts started up again! And when he told us he saw a bladder, we let ourselves become excited. That meant he had stopped the blood flow from donor to recipient, and the poor smaller donor could start to build up his own amniotic fluid. He showed us the heart on the recipient, and how it had become enlarged from having to work against so much pressure. It seemed to us to beat more strongly, and he said it should recover in 4 weeks. There was even the beginning of a sac around the donor, rather than the shrink-wrapped appearance before. For the same reason, the sac on the recipient was now normal, rather than excessively bloated. That has made all the difference in how Julie is feeling. She’s so much more comfortable. Finally, he found that the blood flows in the umbilicals are still correct.

Next update will be tomorrow night London time. Today Julie wanted to get out of the room and we made a brief foray to the National Gallery, which was fun but hard on her. Maybe tomorrow we’ll make it to Greenwich on a boat on the Thames, so I can see 0.00 longitude on the GPS (Julie’s real excited about that), and also check out the Dali show in this building. Actually, I could walk 5.3 miles east and see it, but it seems more appropriate to see it where it’s determined. And, you can see I’m getting tired and that’s enough.

7/20/00 3pm

The scan looked good for both babies, three hours after the procedure. Blood flow on the recipient twin through the umbilical had turned into the correct direction again. His heart problems, if everything goes well, will self-correct in 2 – 3 weeks. The post-op scan was reassuring to see them both alive and moving around since many problems happen right away. Now the next 24 hours are a critical time. We go in tomorrow at 5pm and hope to see a bladder on the donor and everything else positive. The great thing is that Julie is a lot more comfortable now—amazing that it can be a relief to feel like you’re pregnant with twins.

We’re sitting in a tiny, post-op room, called "Counseling Room", stiflingly hot, like all of London, at King’s College Hospital, in the Harris Birthright Research Center for Fetal Medicine. Julie’s reading, and I’m typing, and it’s been an hour and a half since her procedure was finished.

Bottom line: Prof Nicolaides was very pleased. He thought Julie was "brilliant." Time will tell. If contractions were to start right away, they would start in the next hour or so. If one or more of the twins were to die, it would probably be in the next 24. We just have to wait. But as it stands, Julie’s a lot more comfortable already. They took out three liters of amniotic fluid, though they put some in as coolant during the procedure, as the laser-burning heated things up.

Now in more detail: we had a crummy night with the jet lag, up most of it, with Julie really uncomfortable and anxious to get this done, both for the discomfort and the harm was occurring. But finally we drove in a hot cab to the hospital and found our way to this ward, which is very informal, crowded with patients, and a little old.

There was probably an hour of prep and consultations between doctors, looking at the babies with the ultrasound, figuring out how they’d get in between the babies, not puncture the membrane, and still have a clear shot at the entire placenta behind them. Either these guys have unbelievable spatial cognitive abilities, or I have none, or maybe lots of experience gives it to you—but there was no way to watch and figure it out.

Then they numbed Julie’s skin and Prof Nicolaides asked her to break his arm with her hand as he plunged a 10mm metal tube into her abdomen. Once in, the part on the outside had several ports for inserting other devices, which they did right away: a fiber optic cable that had a hugely bright light on it and the laser. Then, without needing to refer to the ultrasound, he found his way immediately to the placenta, watching the return from the fiber on a monitor. What most people wouldn’t realize is that the monitor was showing a tiny, tiny field of view, maybe a quarter inch or so… I figured that because every so often a part of a baby would cover the screen, and you could see its skin so close up it looked like a fingerprint pattern.

He spent probably 10 minutes tracing arteries and veins and figuring out the circulation. How he could do this, looking at a quarter-inch circle at a time, and having the screen move maybe opposite to how his hand moved, was completely beyond me. It would be like finding your way on a city map looking at one intersection at a time. Then he went back over it and started burning some in the middle, using three second pulses from the laser. Some of them made a popping sound. They turned white as they burned on the screen; if he kept it on longer, some burned black. He went at it for what seemed like a terribly long time, then went back over the whole field, making sure that he caught all the right ones. Some had "come back," because only the surface had been burned. Julie was turning pale and he couldn’t get her to concentrate on the screen to divert her.

There were many people in the room, some there to learn, several to assist. He’s done hundreds of these, and the team seemed good. The room itself was like this whole hospital: pretty funky, but functional.

At one point he had to push one baby out of the way with the fetoscope. Finally he was almost done, and concentrated on a couple very big vessels. He said they scared him because they were big, and if they popped it’d be bad, but he burned them from the side, carefully, and it worked great. Experience and artistry.

Then, finally, the moment we’d been waiting for: he took the fiber out and let the opening gush amniotic fluid out into one tupperware bowl after another. It made the slow, careful amniotic reduction procedure at Swedish look silly in how dramatically everyone treated it then. We’ve been joking about how your acclimation to scary procedures can keep increasing, till you could easily do your own open heart surgery. In any case, Julie was truly brilliant through this. Except, she adds, when they drew her blood in the beginning, which gets her faint.

One little image that will stick with me as another reason to be impressed by Prof Nicolaides: when it was over, some amniotic fluid had spilled onto the floor. The nurses started to clean up, but he grabbed towels and swabbed the floor himself. He cares about his patients and his ward. We still haven’t been able to pay for anything, even though we’ve tried several times.

We can still worry ourselves about so many things: did their fluid get too hot, did the laser light hurt their eyes, will they both survive? Time will tell, maybe years to find out, maybe days.

7/18/00

I’m typing this on the plane, wondering if I’ll be able to get it on the internet later. We were very fortunate to get Julie up into 1^st class. It was nice to see her more comfortable, looking cute as she pushed a variety of buttons to stretch her bed out. She’s planning on keeping the pajamas. Her flight attendant said, You’ll be taking a Large, I assume?

Later: getting to the hotel was a nightmare. Because of the Queen Mum’s 100^th birthday, all of the usual terrorists had called in their bomb threats. The fast train wasn’t running, and the taxi ride was very hot and slow, and eventually couldn’t even get to the hotel because of detours.  We got out and walked, and even that didn’t work, as a cop turned us away from a bomb threat in the direction we were trying to walk with our suitcases. The heat and crowds and long walk were torture for Julie, and for me, unable to do anything better for her. Finally we got to the hotel, then made it to the clinic, and Prof Nicolaides saw us after an hour, and he was great. Here’s the story:

The twins are now in severe TTTS. We are not doing this a moment too soon. He says they’ll recover, but the recipient’s heart is in failure, pushing against huge pressure, and there’s no amniotic fluid around the donor at all, and his growth has already slowed way down. Also, he has no bladder at all visible, so we passed that acceptance hurdle (why they have to wait for that kind of severe indication is still a mystery to me). He’ll operate tomorrow morning… Julie just has to keep it and them together until then. He was very deft with the ultrasound, maybe the best we’ve seen, and seems confident that all the problems can be reversed. So we’re glad to be on his list, and crossing our fingers for everything tomorrow.

7/17/00

We’re off to London, for the laser surgery to be performed by Dr Kypros Nicolaides. According to Dr Souter, who worked with him for a year there, he’s technically the best in the world. We talked to him last night, and he was great—very logical, smart, confident, supportive, and reassuring but truthful. We read his papers on the internet—really good. The major factor was that he was available in the next two days and Dr Quintero not until next Tuesday, way too long for Julie, who is extremely uncomfortable and bloated from the syndrome, and can’t imagine another week.

We considered her having another amnio reduction, but it seemed risky to do a surgery before flying somewhere to have surgery. She wanted to tough it out—it’s actually better for the operation to have a bloated amniotic sac on one twin. I’m really concerned about the 10 hour flight under these conditions. So we’re spending a large fortune on biz class last minute tickets. Best way to use money. The operation itself costs almost nothing: it’s a public health system, I guess.

We leave Tuesday evening and plan to be back Sunday afternoon, British Airways direct each way. We plan to see him at the clinic the day we arrive and surgery is hopefully the next, Thursday. Supposedly it takes only a half hour, with only a local anesthetic… 3 entry points for the laproscopy. The odds, after his doing 300 of these operations over the last 8 or so years: 33% survival of two, 33% survival of one, 33% none. But still better than a series of amnio reductions that have around the same rates, for two good reasons: 1) the amnio reductions have a really high rate of permanent, severe mental or heart problems; and 2) the last amnio didn’t do anything.

All the doctors we’ve dealt with have been extraordinarily helpful and caring, going way out of their way for no reward but to help us try to keep healthy babies. Sure is a different world from the money-centered one of high tech and dot coms.

Visualize a good outcome for us.

Numbers: we’ll be staying at the

It’s eight hours different from Seattle, but we don’t know what hours we’ll be sleeping.

Dr Nicolaides’ clinic is the Fetal Medicine Foundation at 8 Devonshire Place, London, 011-44-207-487-3242. The surgery will be performed on Thursday morning, if everything works out, at King’s College Hospital, 011-44-171-737-4000. I will try to check active voice email or voicemail. We’ll also check our home voicemail.

7/16/00

We have a lot of decisions to make: should we do another amnio reduction if the operation looks too far out in time? We did one last 7/11/00, and on the ultrasound on 7/14 it’s clear it didn’t really accomplish much (the stuck twin had even less fluid than before, .6 AFI, where the recipient has >20). Also, it can render a surgery impossible, but it may also forestall any (more) damage. Tough call that we’ll have to make tomorrow maybe. Also, if Quintero isn’t available or won’t do it by next Thursday, should we go for DeLia, who says he’s putting up a brand new setup, and we’d be the first people in two years that he’s done, with new equipment and new personnel? He’s the expert, but I’d hate to help him work out the kinks.

7/15/00

We have also talked with Dr DeLia, the originator of the surgery. He’s been very helpful, and may also be available. So it looks like we have a couple back ups if Dr. Quintero doesn’t come through. Monday will tell.

7/14/00

We just got back from Swedish. Our doctor there is being incredibly supportive, and has found us another surgeon in London that performs the laser surgery that can correct the problem—similar to Dr Quintero’s practice in Tampa. We are investigating this weekend and hope to make some plans on Monday to go either there or to Florida.

The twins are not in an emergency yet, but are close. Ironically, we would prefer that they were, because the criteria for acceptance for the surgery are more dire, but this syndrome inevitably gets to that point anyway, and we would rather proceed before any more damage is done.

Background:

The twins have been diagnosed with Twin to Twin Transfusion Syndrome, where their blood supplies are all interconnected in the placenta. One winds up pumping blood into the other, whose amniotic sac fills way up, while the other, called the donor, gets "shrink-wrapped" as he loses fluid and the membrane adheres to him. With no intervention, it’s 100% death rate for both. With the type of intervention that Swedish does (draining the amniotic sac of the recipient as much as 15 times), for us it’s a 50% survival rate for 1 twin, with a 30-40% chance of severe mental or heart problems, including cerebral palsy, for any survivor.

This was a terrible shock for us, but after doing some research, we are optimistic about a somewhat unorthodox surgery that can improve the odds dramatically for one or more healthy survivors. Basically, it uses a laser to disconnect the twins from each other, so that they can’t damage each other. Though the surgery is risky, it really seems to attack the problem rather than the symptoms. We’ve contacted several women who went through it, and they were very happy about it.

Here are some websites that go into it: