Friday, July 31, 2009

More small steps

I realize that an in-depth recounting of the scheduling of every doctor's appointment may not be of interest to many, but this blog is the main way I've been communicating this stuff to our families, so I hope the rest of you will skim over some of these details as you wish.

Anyway, there were basically two small developments yesterday. I finally set up an appointment with the head of cardiac catheterization (and of course, the only time he had available conflicted with an OB appointment I'd already made, so then I had to reschedule that, and now I'm seeing a different doctor, which might not be a good idea, but whatever). The other development was that I got an e-mail back from my friend-of-a-friend down at Stanford saying that they'd reviewed our echocardiogram and saying "there is nothing new about it that wasn't seen before." It might have been nice to get a more in-depth analysis, but she said I could call them any time. Oh, and I finally did get insurance authorization to actually have a proper consult down there, but I don't know if we really need it at this point. Anyway, I guess it's good to know that there are no other major problems with the heart that can be seen at this point.

So, as it stands now, we have 5 medical appointments in a 2-week stretch at the end of August: surgeon consult, a regular OB appointment (I get to do my glucose challenge!), the cardiac catheterization doc's consult, a followup echocardiogram, and another ultrasound to make sure that the baby is growing and that everything else looks basically OK. I guess this is our new life.

Wednesday, July 29, 2009

More about time off and a mystery doctor's appointment

First of all, thank you to the many people who contacted me about family leave benefits. I talked to HR again today and felt a bit more optimistic about things. The FMLA says that I can take up to 12 weeks of unpaid leave from my job and keep my benefits, and my understanding is that this is in addition to the paid time off and disability leave I can take. I have to admit that I kind of laid it on thick in talking to the HR woman about how our baby is going to have to undergo multiple open heart surgeries in his first months of life, but hey, I think I'm entitled, and after that, I think she did seem more sympathetic and is really trying to help us out now.

Not much else of note happened today, although I did get a phone message saying that I was to call a certain phone number to set up an appointment with a Dr. Moore in pediatric cardiology at UCSF. I had never heard of this Dr. Moore, but I dutifully called the number back to set up an appointment, but then the person I spoke to didn't know what kind of appointment I was supposed to be setting up or when, and of course, I didn't know either, so hopefully they'll call back tomorrow. After that conversation, I looked him up online and it turns out he's the director of the pediatric cardiac catheterization lab at UCSF. Cardiac catheterization is a type of less-invasive heart surgery that can be used to look inside the heart, and sometimes to open up blockages in the heart, in addition to various other things. Our little guy will be undergoing several of these in addition to his open-heart surgeries, but my understanding is that the first won't be until he is at least a few months old, so I'm not exactly sure why they want to see me now, but I'm not complaining...I am very anxious to meet all of the people who will be involved in treating our son as soon as I can.

Moving along

Up until last week, I was worried that I was gaining too much weight in this pregnancy. These days, the doctors say you should gain 25-35 pounds, and I gained 17 in my first 19 weeks! Now I worry all the time that my baby isn't growing and I'm not gaining enough. It's hard to notice the changes, since they're so gradual. But last night, as I was lying on my side trying to fall asleep, I realized that I wasn't comfortable...that something felt squished. And then I realized that it was the weight of my belly making me uncomfortable. So, I took a pillow and wedged it underneath my belly and it fixed the problem. Not much of a story, I know, but this was the first time I'd had to do that, and it was tangible and reassuring evidence that I am getting bigger.

In other news, I had a conversation yesterday with our department's human resources rep that was pretty disappointing. It looks like in addition to my vacation time and sick leave, I am only eligible for 5 weeks of disability benefits (or 7 if I have a cesarean!) Luckily, my boss has been extremely supportive about all of this, and I'm hoping I can work something out with him where maybe I work part-time for a while for no pay, just to keep my benefits. Hopefully, there is some mechanism for him to do this. I hate the idea of leaving Iggy home alone all week with a sick baby. Not because I think he's not up to it, but because I feel like this is a responsibility we should be sharing, not to mention the obvious fact of how hard it will be to go off to work leaving our little guy at home while he's still recovering from surgery, or perhaps even while he's still in the hospital.

Tuesday, July 28, 2009

A few minor developments

Finally heard back from two of the three people I was waiting to hear from this morning.

OB office: my blood tests indicate that I am not currently infected with CMV or toxoplasmosis. They had run these tests because our 20-week ultrasound had showed some "bright spots" in the baby's bowel in addition to the spot in the left ventricle. I guess the fact that the tests came back negative doesn't necessarily mean that those bright spots aren't some other sort of problem, but I guess this is good news. I asked a couple of the doctors I've talked to if they thought that the bowel spots could be related to the heart problems, and they all said they didn't know of any reason why they would be.

Surgeon's office: we finally have a consult set up for August 13th! It's at 7:30 in the morning, which is fine for me, but I haven't broken the news to Iggy yet. He is, to put it mildly, not a morning person.

Still waiting to hear back from the docs down at Stanford about our echocardiogram (hopefully they were sent the correct one this time), but that's not really urgent anyway.

Monday, July 27, 2009

Don't call us, we'll call you

One of my least favorite things about doctors is that you can't call them and talk to them. You have to call, leave a message, and then they will call you back.

Today I was at work, and since I was waiting to hear back from Dr. Tacy at Stanford, my OB office about some blood tests, and the scheduler for Dr. Azakie, I made sure to be close to my phone all day as much as possible. By 2:30, I still hadn't heard from anyone, and went to a yoga class. When I got back, there was a message from Dr. Azakie's scheduler saying that she had set up a consult for us (but didn't say when) and there was one other missed call from a caller ID-blocked number, which could have been Stanford. Ah well, maybe I'll get to talk to them tomorrow.

Sunday, July 26, 2009

Lazy Sunday

Even though I have a million things I should have done around the house this weekend, neither of us is quite back in productive mode yet, so Iggy and I decided to go see a movie. So, we saw Star Trek. No, we hadn't seen it yet, and yes, it is still playing at one movie theater here in the city. Overall, we enjoyed it, even though I almost started crying during the opening scene, which, to my surprise, involved a woman (Kirk's mom) delivering a baby (Kirk) under trying circumstances. Luckily, there were no more babies in the rest of the movie, so after that, I was able to enjoy some escapist fun.

But on a more positive note:

As I mentioned earlier, Iggy and I have been tremendously grateful for all the messages and gestures of support we have received from our friends and family this week. But honestly, we already knew that we are very lucky to have a lot of terrific people in our lives.

What has been more of a surprise to me has been the support we have gotten from other parents of kids with CHDs. I know that all of these parents face huge challenges of their own, and I am truly in awe to see that so many of these people have enough left over after taking care of themselves and their families to reach out to someone else in need. I hope I can do the same for someone else someday.

Rough morning

After a couple of pretty good days, I hit another rough patch this morning. I guess the grief and anxiety comes in waves. When we first learned the news, my first thoughts were for the baby, and what he would go through, and what kind of life he would have. Then I worried about us, and what we would go through, and the toll it would take on our lives. This morning, the overwhelming emotion was guilt over what impact this will have on other people.

I'm still not exactly sure how much leave I'll be able to take when the baby is born. If nothing else, it is crucial that I maintain my insurance coverage, because my work provides health insurance for our whole family, and our son's medical care in his first year of life is, no exaggeration, probably going to cost at least $1 million. Anyway, I started to worry that I would have to ask my boss to pay me for time I wasn't working, or that I would have to go back to work while our baby was still recovering from surgery. I knew that although I could manage to be physically present at work under those circumstances, I would never be able to get anything done. My boss has been very understanding about my situation thus far, but honestly, I've never really "clicked" in this lab, and I know he hasn't been happy with my level of productivity even in good times. And now I was really going to be deadweight.

Even more than that, I felt guilty again about putting our families through this. This will be the first grandchild for my parents and for Iggy's mom, and everyone was so happy and excited about this baby. And now I felt like I am snatching that happiness away and replacing it with stress and fear. Which is, of course, ridiculous, because this isn't my or anyone else's fault. I feel totally confident that we did everything in our power to make this pregnancy a healthy one. But still, all these mental images flashed through my head of our families spending Christmas with us at the hospital, crying, on what was supposed to be such a happy occasion.

I felt like I was ruining their experience of being grandparents, and aunts and uncles, and ruining Christmas, to boot! Again, I know none of this was rational, but I couldn't stop feeling that way. You know, it's bad enough that we all have to go through this, but it almost seems like a divine cruel joke that I am having to face this as a hormonal pregnant woman!

Anyway, after crying for a while, I went online and did some more research on my work leave options, and it looks like theoretically, I can go on short term disability for 6 months, although I'm not totally sure how much of that can be used for maternity leave. I suppose under a worst-case scenario, I could have that knee surgery I need to have anyway and qualify for disability that way! Disability will only pay 60% of my salary, but I'll get to keep my insurance, and we can manage somehow. We'll all manage somehow.

Hopeful links

As you may have noticed, I've added some links to the sidebar here. I had posted a link to this blog to a Yahoo group on CHDs, and found some great resources through some of the other families that contacted me, which I appreciate tremendously.

Perhaps most exciting was finding blogs by the parents of two other little boys, Joshua and Tyler, with HLHS who had their surgery at UCSF performed by Dr. Azakie. Both of these little guys had a tough recovery from their initial surgeries, and both faced life-threatening complications. But you would never guess that to see their pictures today. I e-mailed Joshua's mom to thank her for her blog, and she immediately sent back a really wonderful response and gave me her phone number and said I could call any time. Tyler's parents wrote a really detailed account of his first surgery (which can mostly be found here) which was incredibly helpful, because I had a lot of questions about the timing of things and at what points we would be able to have physical contact with our baby, etc.

Another website I came across was Inspiring Hearts, which tells the stories of adult survivors of serious congenital heart defects. None of the people profiled here have HLHS, but it is pretty amazing to read about the prognoses some of these people were given as children, and to hear how well so many have done, and how rapidly this field has advanced in the last 20-30 years. Here's hoping it continues to advance at that pace.

Saturday, July 25, 2009

Sorry to bother you, but...

It's always been a very hard thing for me to share my problems with other people and to ask others for help. Anecdotally, I used to sometimes tell people that this was rooted in the fact that when I was a kid and I used to ask my dad for help with homework, he would mock me in a high-pitched voice, saying "I can't do it! I'm just a girl!" Of course, that was my dad's way of encouraging me to be self-sufficient, and while that I am, I suspect that this is more of an innate personality trait than a result of his parenting techniques.

Anyway, that being said, I am now dumping the biggest problem I have ever had on a tremendous number of people. I sent the URL for this blog to a lot of people, including many with whom I have a relationship that I would characterize as primarily professional rather than personal. I even posted it on my Facebook account.

Going so public with this was not easy for me, but it was a calculated decision. Basically, my thinking was that even if I don't know you very well, if I think I might run into you a year from now, and you might innocently ask "how's the baby?" I think it's only fair to prepare you in advance for what might be the answer.

Not much news

After a whirlwind week, Friday was a relatively quiet day. I did call back again to try to arrange the consult with the UCSF surgeon, and the woman who does his scheduling told me that my OB office had sent over the wrong kind of insurance referral--annoying, because I'd already spoken to the OB office twice about this. But amazingly, the woman in surgery told me not to worry, that she would take care of it, and that she would let me know no later than Monday when our consult will be. "I'll call him this weekend if I have to," she said. I'll believe it when it actually happens, but even just to have ONE medical person say not to worry, that they would take care of something felt like a huge relief.

Other than that, there were not too many developments of substance yesterday. I have been continuing to hear from both people I know who have congenital heart defects and also from people who have friends or family members who are cardiologists. One thing I have noticed is that among cardiologists, in general, the more directly they are involved in these cases, the more positive the prognosis. The pessimistic interpretation of this might just be that cardiologists who actually treat these patients force themselves to believe that these patients can do well, because who wants to believe that they are doing something futile, with a lot of suffering along the way? The more optimistic interpretation, and the one I am choosing to accept, is that outcomes for these patients have improved a lot in recent years, and that most adult cardiologists have a more dour view of the prognosis, because they are not likely to be up on recent developments in the field, whereas pediatric cardiologists who work with these patients directly know everything there is to know.

I am aware that at this point, I am making a choice to go through this with blinders on, to some extent. And yesterday was actually a good day for both myself and Iggy. I didn't cry once yesterday, a friend brought us dinner from Whole Foods, and we ate together and talked and laughed and then watched our newest Netflix arrival: the beginning of Mad Men Season 2. It was pretty much a normal night for us (except we were better fed than usual). The baby has been moving around a lot lately, and Iggy bent over to talk to him a few times. We used to talk a lot about things we would do with the baby when he got old enough to do them, like going camping and to Disneyland, and what we were going to feed him and how we would discipline him, and now we've started doing that again, too.

Of course, the problem with choosing denial is that it can be hard to keep reality out. I have been continuing to read everything I can about different HLHS patients, and I think everyone reading here now knows that a lot of the stories are not good. I joined a few support groups on Facebook this week and got direct messages from two different women who had children with HLHS...both of whom died as babies. At this point, my healthy sense of denial tells me that these women are not typical, that most HLHS babies do make it, that the reason why these particular women chose to reach out to me was as a way to deal with their own grief.

But you know, denial is really not so bad. It's a powerful coping tool. I know that every parent many terrible things can happen to kids: SIDS, cancer, accidents, being victimized by someone. Our anxieties may be far more rational than most parents', but the thing is, going through life constantly thinking these things will happen to you is no kind of life. So, we choose to believe that our son will survive his surgeries and do well, that he will have a happy childhood, that his surgically reconstructed heart will give him a good quality of life into middle age, and that at that point, he will have more good surgical options that can add another 20 or more good years to his life. If we are proven wrong, we'll deal with that when it happens, and not before.

Friday, July 24, 2009

I think I can

When I woke up on Wednesday morning, I immediately started thinking to myself "what have I done?" It seemed insane to think that I could do this thing. How on earth could I be choosing to put myself through this? To put Iggy and our baby through this? And honestly, to put our family and friends through this, because I know that this experience is going to affect everyone who cares about us. Wasn't it crazy and selfish to go ahead and have a sick baby, who was going to require incredibly expensive medical care, and whose future could, at best, be described as uncertain?

But somewhere along the way, I guess yesterday, maybe after talking to Dr. Tacy down at Stanford, I turned some sort of a psychological corner. It is still overwhelmingly sad to know that we are all going to have to go through what we will go through, but I now feel like not only am I 100% sure we are making the right decision for us, I also feel like there is a good deal of hope for a pretty normal and happy life for our little family. As I wrote yesterday, it was really great to hear from Dr. Tacy that her philosophy was that it was best to treat these kids as normally as possible. It was also great to hear that she generally felt that the vast majority of these kids have a good quality of life...even some of the really sick ones.

I also spoke to the other contact I had a Stanford last night...this is the friend of a friend who is a fellow with Dr. Tacy. I got to ask her a couple of questions that I hadn't thought to ask others earlier, including what percentage of babies come home from their first surgery with feeding tubes or on oxygen. She said that it was heavily variable from institution to institution, and that some places tried to keep kids in the hospital longer rather than sending them home with tubes, but that at Stanford, she thought about 20-30% came home with feeding tubes, and that about half or maybe a little more than half had some feeding issues. That probably doesn't sound great to most people, but it sounded a lot better than what I had feared. She also said that very few go home requiring supplemental oxygen, less than 10%, which is really good news, because a baby tethered to an oxygen tank is not very portable.

As I think I've mentioned before, one of the really overwhelming things about this is that although I am at a distinct advantage over most parents of children with critical illnesses in that I have a Ph.D. in Biology and thus can speak "medicalese" fluently and have access to pretty much all scientific literature through my work, there is very little published research on this disease. So, I've mostly been reading about people's anecdotal experiences online, but it's hard to get a sense of how "typical" any one kid is.

Another encouraging thing that the Stanford fellow told me is that her gut feeling was that these surgeries would probably last for at least 30-40 years. This is a lot better than what we were told by the UCSF cardiologist, which was 20 years. That's the point at which a heart transplant would be the next (and presently only) option. Of course, nobody really knows, but anecdotally, there are definitely HLHS kids out there 20 years past their last surgery who seem to be doing fine. But again, I have no idea how typical they are, and nobody else does, either, because the studies simply haven't been done and even if they had been done, the surgeries being done now are slightly different from the ones done 20 years ago.

Maybe more than anything, I think it was good to hear good things about UCSF's department from both the Stanford docs I spoke with. Beyond not having to deal with the insurance nightmare, I was really feeling daunted about the prospect of having to pick up and go somewhere else to have our baby and to go through these surgeries. Palo Alto is only an hour away (assuming no major traffic) but that's no mean commute when your baby is in the hospital for weeks at a time. In contrast, UCSF is a place I go every day anyway, because I work there, and when Iggy and I first lived together, it was right across the street from that hospital, and being able to be at home while going through this goes a long way towards preserving that elusive sense of "normalcy."

So, anyway, I'm not sure if what I am feeling right now is acceptance or denial. Whatever it is, it's not so bad. I even managed to sleep through the night for the first time since getting the news, and could even taste my food this morning.

Thursday, July 23, 2009


As I started looking around at HLHS support groups, I noticed that a message kept popping up from a college kid named Tom Glenn. He said that he was an HLHS patient, now a sophomore in college, who was in the process of writing a book about HLHS and was looking for questions from parents that he could answer and also use for his book. So, of course, my first questions for him were about what it was like to grow up with such a potentially dire diagnosis. I worried that even if our son were to sail through all of his surgeries, he would grow up thinking he didn't have a future to look forward to. I also asked him a few other questions about dating, socializing and other things, and he was kind enough to write back immediately, and also to give me permission to repost his answers here:

I do believe that at times I feel bummed out that I cannot participate in certain activities. Until about the age of 10-12, the physical level of kids was pretty low so it was very possible for me to participate in sports at my own comfort level. Once i moved into junior high however i had to forget about participating in most sports and find other things such as boy scouts (i am an eagle scout now) and academics, and student government. If my friends are playing a quick game of basketball and know about my physical limitations however, i can still play a game like that with them...its just the organized sports that i ultimately had to stop which at first bummed me out but now it is fine.

As for the future question, i know that I am going to have a future. I am very healthy and have not had an open heart surgery since my 5th one over 10 years ago. I know that eventually I am going to have to have other procedures done obviously but medicine and technology are so great now that I trust the doctors enough that I do not worry about it on a constant basis. Before a surgery, yes i get frightened greatly, but otherwise, I know that right now i am healthy and as long as i am healthy, i am living tthat part of my life to the fullest.

I have never experienced any feelings in my life that have kept me from dating or getting in a relationship with a girl. the only thing i struggled with was being comfortable with my scar but i soon learned that girls love the big scar on my chest which made it all better. Honestly, it is the girls that worry more. After a long relationship which i have had before, the girl does wonder what your future holds like most girls would and it just takes some reassurance and she would understand if she truly liked you.

My medications currently include: Coumadin- a blood thinner because i used to get blood clots when i was a baby and have been taking them since i was a few days old. Digoxin- because my heart began having an arrythmia, i began taking this to make sure it did not get worse. Enalapril- another medication that attempts at limiting arrythmia's i believe.

The only difference i see between the relationship i have with my mother and a normal child without HLHS is that my mother is more protective of me and tries to limit what i do. she didnt want me to drive at the same age most of my friends did because she was just worried and knew i required some special attention but as i have grown up and gone to college i believe she understands and although she worries just as much, she tries to keep it to herself.

Anyway, reading this made me feel a lot better, although I obviously still have a lot of anxieties, and there is no guarantee that our son will fare as well as Tom. But again, if he has the chance to live a life like that? I think we have to try and give him that chance.


First of all, I wanted to say that Iggy and I have been totally overwhelmed (in a good way) by the positive wishes we have received through e-mail, Facebook, etc. I've tried to get back to people to the best of my ability but have pretty much colossally failed on that point thus far.

A couple of months ago, I committed this afternoon to go talk to kids in a summer program for minority biology students about my work and to discuss their projects with them. Of course, when all this came up, I thought about cancelling, but somehow decided not to, although I ended up being too distracted to really prepare a proper talk. It all turned out fine, though, and I actually had a really good time talking with the much so that I actually didn't think about this problem for a couple of hours for the first time all week, which was a really nice break.

Anyway, I meant to spend most of today at work, but it didn't quite work out that way, but it was just as well, because as I wrote below, you may recall that I had sent a disk of our echocardiogram to a very well-known cardiologist down at Stanford to get a second opinion. However, I wasn't sure when or if she would actually get back to me, but as it turned out, she called me today and talked to me at great length.

The bad news was that the disk with the echocardiogram I had sent her? Wasn't mine. They gave me someone else's scan! So she wasn't able to tell me anything about that.

But we did talk at length about prognoses and about the relative merits of Stanford vs. UCSF. She was generally quite positive about the prognosis for these kids and seemed to also have a positive opinion about their quality of life, although as I already knew, she said that there is no long-term data on outcomes. She also had a high opinion of the surgeons both at UCSF and at Stanford (she used to work at UCSF before going to Stanford). She did say that if it were her kid, she would go to Stanford, because she felt that the surgeons there were a bit more experienced, but she also said that UCSF was very good and that she thought the survival rates were similar and that the postoperative management at UCSF was excellent. (I also heard good things about the UCSF surgeon, Dr. Azakie, through another route...a cardiologist friend of my friend Monica was very positive about Azakie).

She also took the time to give some advice about parenting an HLHS kid, which was to try to treat them as normally as possible, which was a great thing to hear, since it is exactly what I hope to do. She was really just fantastic in every way, and gave me her direct number and said I could call her any time, which is amazing. I called UCSF and asked them to send her the correct scan this time, so hopefully, I'll talk to her again, soon.

One other interesting technical thing I learned in talking to her is about the type of surgery they do there. You can skip this paragraph if technical details are not your thing. For the first surgery, there are two different procedures they can do: one is an open-heart surgery called the Norwood procedure, and the other is a newer, less invasive "hybrid" method. The Norwood is the classic procedure and has been around a long time. The "hybrid" used to only be done on very high-risk babies that they didn't think could survive the open-heart surgery, but now some surgical centers are doing it on virtually all their patients, because they have good outcomes with potentially less risk. But at Stanford, they don't do the hybrid surgery because their Norwood results are so good...she said that in the last year or two they had close to 97% survival and that she thought UCSF had a similar rate. That's pretty amazing, because the first surgery is traditionally the riskiest. I still haven't been able to talk to the UCSF surgeon yet (but finally got insurance approval to make an appointment tomorrow) but will ask him about this, as well.

Anyway, I wouldn't exactly say that today was a "good" day, but it was a significant improvement over the last few days.

Our latest ultrasound...image taken during a rare moment of tranquility, as he seems to spend most of his time kicking up a storm.

Belly pictures

One of the hardest things about all of this is that suddenly, the most joyful thing in our lives was transformed into something horrific. But we are trying our best to stay positive and to enjoy this pregnancy and our time with this baby.

So, for the sake of trying to maintain some normalcy about all this: here are some belly pictures. Please excuse my stretch marks.

Quality of Life

Iggy and I received the news about our son's HLHS on Monday, and we both took the day off Tuesday to grieve and process the information, and to make a lot of phone calls to family and friends and to doctors.

Several of the people we have talked to, both family and doctors, have suggested that we terminate the fetus. We are now at 20 weeks gestation, and by law, we have 4 more weeks in which this is an option. If we knew that our child would be severely disabled, that is what I would want to do. But that's the thing...we don't know what our baby's outcome will be. There are several people in their twenties who were born with HLHS, who had these surgeries, and who had pretty normal childhoods, and went on to college, and who are doing OK. The collective wisdom is that at some point, all of these people will require heart transplants, but nobody knows for sure. And as an M.D. friend pointed out to me, cardiac surgery and transplant surgery are two of the fastest-changing fields in medicine. 20 or 30 years from now our son may have a lot more options if his heart starts to give out.

Some babies with this die during or shortly after their first surgery, in the first month of life. Some survive to adulthood. I think the hardest thing is to have a child somewhere in between there, particularly a child who has to suffer through lots of complications, who has to have tubes in his body to help him breathe and eat, a child who experiences growth restriction and developmental delays. That is my dread.

For this reason, we are trying to get all the information we can about what factors predict success in these surgeries. One huge one seems to be the site where surgeries are performed. We are currently being treated at UCSF hospital, which does a handful of these surgeries, but is not particularly considered to be a leader in the field, as far as I can tell. We're also looking into treatment at Stanford, which seems to have a slightly bigger and better-known program, but the huge kicker there is that I don't know if our insurance will cover us at Stanford because it's "out of network" and my insurance company says it won't cover out of network services that are provided in network. But I haven't yet looked into how negotiable that is.

Another factor that can predict success is the size of the baby when he's born. Obviously, we won't know that for a while, but I don't think there's any evidence of growth restriction or anything so far. We're going in for another ultrasound in 6 weeks to make sure he continues to grow on target.

Other predictors of success are the absence of other health problems. I have a bit of nagging worry about this, because when we went for our 20-week ultrasound, which picked up the "bright spot" in the left ventricle, they also said they saw a bright spot in the baby's bowel. When the Ob called to tell us about this, he said that they were both "probably nothing." Obviously, the heart thing turned out not to be nothing. They sent us for some follow-up testing on the bowel, too, but we won't have the results for a week or so.

And finally, there are some elements of the heart morphology (besides the HLHS) that can predict success with these surgeries. I'm planning to call the echocardiographer at UCSF back to talk to him about this, because I didn't know about it until yesterday. In addition, I'd sent a disk of our echocardiogram down to someone at Stanford whose name had kept coming up in my research. I had called her office, and learned that I couldn't set up a consult with her until I had insurance authorization, which, again because Stanford is out of network, would take at least a week, if I could get it at all. But I guess she took pity on me, because she told the nurse she'd look at my scan if I mailed her the disk, which I did on Tuesday, sending it overnight, with delivery confirmation. Of course then, I wondered if she would ever actually get around to looking at it, since I'm sure she's incredibly busy and she was just doing it basically as a favor to a stranger. But then, through a tremendous stroke of luck, a woman I work with, a pediatrician, told me she was good friends with one of the attendings who worked in that department at Stanford. My colleague spoke to her last night, and she agreed that she would look at the scan with the person I'd sent it to, and is going to call us tonight and talk about it, which is absolutely terrific news.

It's absolutely astonishing how much greater access you can have if you have a few friends in the medical community. My high school friend Elaine is an ER doctor in New York, and she has also been working her network for us, talking to people about where to go and what to do, which has been tremendously helpful.

Anyway, that's where we are now. Termination is off the table unless we find out something else is seriously wrong. However, if things don't go well down the line, we will also have the option of not doing the surgeries and providing comfort care only.

We feel like we need to give him a chance. But we also want to make sure that it's a real chance at a normal life, and not false hope.

The news

Reposted from an e-mail I sent out to friends and family on Tuesday morning:

I apologize for the mass e-mail, but Iggy and I received some news yesterday that will profoundly affect our lives, and I wanted to communicate it to people as efficiently as possible.

A fetal echocardiogram has shown that our son, due in December, has a serious heart defect known as Hypoplastic Left Heart Syndrome. Basically, the left half of his heart is not developing properly, and he will need at least three surgeries to treat this, the first when he is less than 10 days old. The long term prognosis is not really known, because the surgeries to treat this condition were developed in the 1980s, so the oldest survivors are now in their 20s. If he survives to adulthood, which he has about a 75% chance of doing according to present statistics, he will almost certainly need to have a heart transplant at some point. However, there are people out there with this syndrome who've had relatively normal childhoods, attended college, and gotten married and had kids of their own.

Obviously, we are devastated by this news and still trying to take it in. We have decided not to terminate the pregnancy, and are hoping for the best. But it's going to be a rough road ahead.

If you are interested, here are some links I've found with more information about this condition: (Look under HLHS...stories and pictures of kids with this disorder)