[Note: This post generated a lively discussion in the comments, which may be of interest to you if you're grappling with vasa previa. Click on the post title to read the post with all comments.]
The already well-informed Dr. Kuppens had printed out the latest recommendations from Up To Date, an independent informational clearinghouse for physicians, to ensure that her team is aware of the most recent guidelines. Trouble is, there is no recommended optimal management of vasa previa; it's too rare, and there are no large or controlled studies that demonstrate the most effective protocol.
In that light, said Dr. Kuppens, we have room to continually revise our plan. Catharina Hospital will admit me for the duration at any point if that's what we want, and we can even pull the c-section date forward--as early as 34 weeks--if we feel that would be best. If I have contractions again like those Monday, we'll call enough enough and go ahead with steroid shots and a c-section 48 hours later. She even said that if we--or she--just have a gut feeling, we'll go ahead with the c-section. It was refreshing to hear a doctor acknowledge that gut feelings can be valuable sources of information. I certainly believe they can--not because of some voodoo psychic whatever, but because those intimate with and experienced in a situation can pick up on subtle clues that don't quite make it into the conscious light of day.
The hard thing is to know what's best, of course. Boys in particular have the most trouble with prematurity, trouble that can extend into their school years and affect their fine motor skills. But every day he stays in the womb is a day the fetal blood vessels could rupture, and at this gestational point being on the outside will always give a better outcome than total rupture. If we knew when that would happen, we'd wait till the day before and get him out. But, of course, we don't know.
For now my husband and I have opted that I stay home. Despite the panicky rhetoric peppering the Web, we feel that being in the hopsital gives a false sense of security. I've read over a hundred real-life stories and distilled the facts into the following conclusion. In diagnosed vasa previa, there are really only two basic scenarios: either you have some warning before massive rupture (water breaking but vessels still intact, contractions that change the cervix, or simply reaching 36 weeks) or you don't. If we have warning, then the fifteen minutes it will take to get me on the operating table, even coming from home, are more than enough. If we don't have warning, then even three minutes will be too long.
From here on out, we'll also check the baby's growth and have a CTG at our biweekly visits (in addition to the transvaginal cervical length check). The CTG is to check that the baby, ever heavier, isn't compressing the blood vessels over the cervix. My husband and I were worried about that, but Dr. Kuppens reassured us that it's unlikely; the amniotic fluid provides a cushion and buffers the baby's full weight. I sat up as straight as I could during today's CTG, though, to let the baby put as much pressure on the cervix as I could. The results were great; the baby was active and his heartrate was strong, and there were no significant contractions. My blood pressure and pee were perfect; I weighed in at 65.0 kg (143 lbs), up half a kilo (just over a pound) since last Friday.
My cervical length was 2.7 cm, which is less than the most recent 3.2 cm and bears watching but is not yet cause for concern. Dr. Kuppens showed us in detail during Monday evening's ultrasound how they measure the cervical length; depending on the angle (and the person doing the check), readings can vary by a centimeter or so (the shortest number wins). She also showed us what 1.5 cm (50% effaced) would look like. That evening she measured 4.1 cm and 3.2 cm back to back, demonstrating that it isn't down-to-the-millimeter accuracy even though it's expressed as such. That said, today's reading and the reading from a week ago (also 3.2 cm) were made by the same ultrasound technician, who takes three measurements each time. So I'd bet the drop to 2.7 reflects a real change, even if not a full half-centimeter.
My next checkup is Tuesday.
Friday, February 22, 2008
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7 comments:
Dear Grayson,
I'm sure you don't want to hear this, but I'm going to say it anyways. Get thee to the hospital and STAY there! The comparison study on outcomes that I sent you is a large one, the largest ever done and it is the information you need. You are NOT a candidate for outpatient management. And yes, even babies that rupture in hospital can be saved. If they are delivered quickly enough and given those life saving blood transfusions soon enough. Trust me, I've seen more than 2000 cases of vasa previa. I know this. We don't have any diagnosed cases in our records where the baby died when they used our management recommendations. Not one. Like you said, they can't predict some things, so why try? Its your baby's life at stake. Please contact YinkaMD@aol.com if you or your doctor have any questions about your management. Yinka Oyelese is the most published expert on vasa previa. He is also a member of our medical advisory board and the author of that study I sent you. At first I questioned the study too, simply because it is a comparison study. I've have been assured that it is a valid study because it only compares outcomes of vasa previa cases within vasa previa cases. The IVPF and several hospitals around the world participated in the study. Please, I'm not trying to frighten you. But you need to be in the hospital now.
Cindy Paris, Secretary and Co-Founder
International Vasa Previa Foundation
http://IVPF.org
Wether you approve this comment or not, you will have to read it. You are playing Russian roulette with your son's life. I hope you don't come to regret it.
Dear Cindy,
Thanks for your comment on my most recent post. I appreciate your tone (not quite as panicky as most of what people in the US have had to say, and more logical). Despite what the poster after you may think, I am emphatically NOT playing Russian Roulette with my son's life. I am doing what we are all free to do: weighing the available information and making what I think is the soundest choice.
There are many factors affecting this decision, as I'm sure you understand. If I were further from the hospital, I'd opt for hospitalization now. My husband and I may yet pull the c-section date forward, possibly as early as 34 weeks. We are still considering whether to have checkups more often than twice a week, perhaps even daily. And there are still many changes that will put me in the hopsital in a flash: more contractions (however mild), more change to the cervix. I'm fully aware, bag packed and waiting in the car, that at every checkup I may be staying for the long haul. Nothing is set in stone and this situation is ever evolving, ever weighing on us, always present in our minds and always being reviewed.
I reread the ACOG study from May 2004 that you sent me. We are actually at this point following the alternative approach outlined there (page 5), namely serial transvaginal cervical length determinations, hopsitalization with contractions or spotting, and elective delivery at about 35 weeks of gestation. Again, this is possible in large part because we are so close to the hospital, and because we are staying vigilant to any and all changes.
To address the assertion that being in the hospital is always the best place: my review of the facts doesn't bear this out. Setting aside the bewildering claims from some that "you must be in the hopsital! I was in the hopsital, and even then it was too late to save my baby!" which patently disprove the point being asserted, being in the hospital will only make a difference when crucial minutes are saved. That doesn't just mean "minutes saved"; "crucial" is the key word. It doesn't matter if a c-section happens in five minutes instead of ten if the baby died after three minutes.
What it all boils down to is risk assessment. Because we live 9 minutes from the hospital and the OR team will not be ready before those 9 minutes have elapsed, we gain nothing from being in the hospital. If I lived 20 minutes away, it would be a different story. If the hospital planned to let me sleep in the OR with a team standing at the ready, it would be different. But this is the real world, and in reality it takes time to get a team and OR ready for surgery, whether the patient is ready or not.
Even looking at the ideal case: I know one vp situation where the mother was already in the hospital when rupture occurred; as it turned out, the OR was fully ready (for someone else) and there was zero time wasted getting her operated. The baby still died. Sometimes it just goes too quickly.
The only benefit, in our situation, to being hospitalized now is peace of mind. But as I wrote in my blog entry, it's a false sense of security; nothing real is gained. I'm not saying peace of mind is worthless--not at all! But I prefer to look at the facts and evaluate them as objectively as I can with the help of my doctors (and others, including you). Even if those facts don't eliminate all risk. WIth vasa previa, there is no way to eliminate all risk, not even with measures that bring peace of mind.
Warm regards,
Grayson
Dear Grayson,
I understand that you are weighing the risks based on the information available and the fact that there is no standard of care for vasa previa (yet). You are also very well informed and your doctor has a good plan in effect as for the rest of our recommendations. Still, there are several things that concern me and the reason I harp on this hospitalization is based on a whole lot more experience with these cases than your doctor has. You won't eliminate all the risk but the numbers of cases in our records show one thing: that the suggested IVPF recommendation works.
1) Babies can still die even if the mother is already hospitalized. Yes, this is true. Theoretically. But there are other reasons for this than what your doctor and other people are telling you. The biggest reason is that all of these people that you've talked to who's baby died even though they were in hospital when they ruptured is that they were undiagnosed. The second reason is care of the infant after delivery (combined with being undiagnosed). Action sometimes isn't taken quickly enough. You've seen some where that is not the case. These babies also need blood transfusions. I have seen many cases where this just wasn't done (or not done in time) for any number of reasons. Published papers show that these transfusions make all the difference in the world. But they have to be quick enough. What your doctor is telling you about timing as opposed to hospitalization (what you are basing your current, flexible, plan on) does not wash with our records (some 2000 cases). Our records have plenty of vp babies in them that ruptured in hospital and died. It has NONE in it that were prenatally diagnosed and hospitalized before rupture occurred. None. They can watch you more carefully and by the time you deliver you will have educated the entire staff who will be on the lookout for an emergency to occur. They will be ready. Yes, theoretically your baby can still die. But under your circumstances, we don't have any cases in our records that have. So why risk it?
2) You and your doctor are watching you closely for signs of change. While it is possible to watch for signs of change, and sometimes in certain select women that is possible, you are not one of them! You have gone past the cervical length safe enough for out patient management. I also suspect that you are not having the fetal fibronectin testing done. Only these two tests together can make it safe for out patient management. The vast majority of women do not qualify for out-patient management. There are no warning signs for rupture. You will not feel it. In the majority of women everything is going along fine and then it happens. Many are not even in labor. I wasn't. Didn't have a single contraction. This is very common. Once the body starts preparing for impending birth, even if the birth process hasn't started to happen yet, that rupture can come at any time without warning. I can't tell you the number of people who are hospitalized where this happens before 35 week delivery. Those babies are all alive today. All of them. The ones you know who aren't were not prenatally diagnosed and/or were not aggressively resuscitated and given blood transfusions immediately. Yes, they can die almost instantly, but they can also be revived. The ones in our records that were prenatally diagnosed, hospitalized, and given immediate blood transfusions at birth (if they ruptured) did not suffer any lasting damages. We have less than a handful of people who ruptured outside of the hospital and their baby survived. Less than a handful! Its not worth the risk. We have no deaths or morbidity recorded where the management recommendations were followed.
3) You are close to the hospital and have time to get there. Again, this is a numbers game. And you seem to be hedging your bets based on the doctor's limited experience with vasa previa. I live 10 minutes from the hospital. I got there quicker than that. Yes, Nate was alive when I got there. But so much damage had been done by the time that he was delivered and transfused that he couldn't hang on. Those are precious minutes and all it takes. I'll reiterate what I've said before: We have less than a handful of people who ruptured outside of the hospital and their baby survived. Less than a handful! Its not worth the risk. We have no deaths recorded where the management recommendations were followed. Why rely on luck when you can put your faith in the numbers?
You are not a candidate for out patient management any longer. And it terrifies me that you have vasa previa and are not in hospital under these circumstances. Other than this, I think that you and your doctor have done your homework and have a good plan in place. I know that stuff you read on the internet can be misleading and frightening. Don't let your doctor discourage you from paying attention to it. Undiagnosed and inappropriately managed vasa previa is an almost certain killer. The IVPF has only been around for 7 years, but in that time we have discovered risk factors and management for vasa previa and created the awareness that got you diagnosed in the first place. We are not doctors, but we work with the best vasa previa medical experts on the planet. They've reviewed our recommendations. We dared not make a single recommendation until the studies had been done to show what actually constitutes appropriate management. The recommendations seem at first like overkill. But it isn't. It works. We were surprised at the results of these studies, much as your doctor is. I say this based on her reluctance to take more aggressive action. But these were the results and I am here to tell you that the records we have bear them out. I wouldn't be harping on you over this if I didn't see these babies come across my desk every day. Vasa previa is devastating. It has a 95% fetal mortality rate, or a virtually 100% infant survival rate based on that diagnosis and management. Take it from someone who is well aware of the risks, both personally and professionally. No one has seen as many cases of vasa previa as we have. No one.
I'll close this epistle with thanks for answering my comments on your blog. Not everyone would have done that. My apologies for my persistence. I do think that every case can be evaluated on it's own, but the facts are simple. In your case, I'm scared. Maybe I don't have a right to be because its not my baby, but vasa previa is such a senseless loss of life. Since Nathan died my every waking breath is to prevent other people from the same disastrous outcome. I wouldn't wish it on my worse enemy. And this is all coming from someone who'd planned as carefully as you have to deliver my baby at home. I had another child after Nate. He was a planned homebirth too. But I developed preeclampsia in the last week or so and had to deliver him in the hospital. I cried. And then went to check myself in. I sure hope you do the same.
All the best,
Cindy
I can well understand Cindy's recommendation and her urge to warn you into hospitalization.
At the same time I can fully understand why you wouldn't want to stay in the hospital in YOUR situation. Maybe because I am used to living very close to hospitals and maybe because I am aware that it still took quite some time for my emergency ceasarian to take place, so I have (as you have) the feeling that there is no real difference in *action* time.
Problem is; you have to live with the result. So you have to be sure that you won't blame yourself too much should things not work out perfectly. Going to the hospital is easier, because it *feels* like a safer bet. I am not sure it is, because I really also believe that hospitals are an environment best avoided. Bad food, bad beds and dependencies on people you don't really know well.
I would be terribly tempted by an earlier C-section though. Again, that might just be projection; I was a week late with my first one and hated those last weeks. I felt the kid was safer outside of my (appearantly not trustworthy) body, where we could control the environment.
It must be really hard for you, all the pressure and all the decisions to take. I am glad the hospital supports you and allows you to take your own decisions. It also shows that they are not sure about the best route - Dutch doctors are definately not too shy to tell you what you should do if they feel there is a recommendable option. My spouse actually had to get used to the blunt way Dutch health professionals have in expressing their recommendations.
My thoughts are with all of you (yes, that includes Mario who must have a hard time taking over the tasks *and* coping with the insecurities *and* being your rock in these turbulent years). It must me such a hard mix, grieving for a lost child and rejoicing in a new one and fearing for that new life. I hope in the emotional rollercoaster you will still find time for yourself and for your relation.
Dear Cindy,
First, please don't apologize for your persistence. I know it comes from the right place and a good heart. I know you have my best interests in mind. And I know I don't have The Answers in this situation, nor does my doctor--no one does, of course. But I listen to you because you do have a repertoire of experience from your years with the IVPF.
Part of my balancing game is based on cold, hard reality, not just risk assessment. I've heard from mothers who were in the hospital when they ruptured, were rushed for an emergency c-section, but had to wait in the hall outside the OR for nearly fifteen minutes before it was ready. In our human world, I just have to accept--and not blame myself or anyone else--that it can go wrong purely because we didn't act quickly enough (because we couldn't act any more quickly without unreasonable measures, like having an OR team standing over me at all times).
The decision (so far) not to be in the hospital is not an easy one, and we are constantly revisiting it. Believe me, it isn't about inconvenience or being bored or just not wanting to spend my time there. At our biweekly visits and last Monday, when I spent the night there, I'm glad to be there. I feel a measure of peace of mind. It's reassuring. But there are lots of reasons not to be there if it isn't necessary. A hospital isn't a great place to be; it's where the sick people are. And it will absolutely wear me out to be there, sharing a room with an ever-changing roommate, getting little to no sleep, eating hospital food, the whole shebang (I've been there before). And after the weeks of waiting come the c-section and possibly weeks in the NICU, when it would be best if I weren't completely worn out beforehand. The strain at home on my family will be great; I have two other children who are old enough to understand what's at stake, and who are stressed by all of this so far. They've already lost one sibling this year.
The extra weeks and stress in the hospital are worth it if they truly buy us something. And that's what my husband and I are trying to decide.
Ultimately, this comes down to having to make a hard choice based on incomplete information, and then having to live with it. Believe me, this choice occupies every second of my day, even my dreams. It's horrible--but not as horrible as not having the choice would be.
If we get the baby out at 34 weeks (which I am seriously considering) and he has lasting problems, we'll always think, "I wish we'd waited it out just a little longer." If we leave him in till 36 weeks and rupture occurs before then (whether I'm in the hospital or not), we'll always think, "If only we'd taken him out sooner." We're going to have to be really lucky--that I don't rupture before the planned c-section or that if we take him out early he does fine--not to be left with *some* kind of regret later on.
It would be so much easier, with no room for regret, if we had no choice. If I were someone who'd just spontaneously gone into labor at 30 weeks. If my doctor said "we're taking him out tomorrow and there is no room for discussion." It would be out of our hands. But it's firmly in our hands, and I think what you are reading as reluctance and/or surprise on my doctor's part is actually her respecting that this is our choice, AND understanding that there is no incontrovertibly right medical path here. She will go along with whatever we decide within reasonable parameters (I doubt she'd let me decide to just go to 38 weeks and see, for example). If I call her today and say "admit me," she will. If my husband and I say we want the c-section next Monday (when I'm 34 weeks), she'll agree. I'm not fighting my doctors on this. I want you to understand this, because it's the direct fruit of the work you and the IVPF have done, in the US and here in NL. And I thank you, and Marlou van Dijck, and the many others from the IVPF for it.
Warm regards,
Grayson
Oh Grayson,
I understand completely why you are are doing what you are. You and I are alot alike. If I were in your shoes, I'd be doing everything you are. Except....I wasn't in your shoes. I was undiagnosed and therefore didn't have that precious gift of Nathan's almost guaranteed survival. Neither did Marlou. She and I have been friends a long time and founded the International Vasa Previa Foundation together. Still, there is no standard of care. You are a responsible thinking person and the jury is still "officially" out on the management issue. The internet is scary and can be misleading. Your doctor doesn't know much about it. You are an extremely intelligent person who is weighing all these issues for yourself, as is appropriate in such a situation as this. Except that those of us who work with vasa previa on a daily basis KNOW what works. I know your doctor is willing to hospitalize you any time you wish. That time is now.
The controversy over management is good because it means that our awareness campaign is working. They used to argue that it couldn't be dx or managed. As the parents look it up and demand the recommended management it will slowly become standard of care, especially as doctors and hospitals see us at the conferences more and more with the documentation we provide. One day nobody will have the choice to make that you do now.
I saw that your daughter died of brain cancer. I'm so sorry! I can't even imagine what it would be like to lose a child you've had with you for so long. But I do know what it is like to lose a child shortly after full term birth. My father died a few years ago. He and I were very close. But his loss was a drop in the bucket compared to Nathan's loss. Back when Nate was born nobody ever looked for vasa previa. The babies all died. And still I ask the what if questions. I see all these other vasa previa babies with the diagnosis and/or better management even if they rupture and wonder why it couldn't have come sooner. Vasa previa doesn't need to be so frightening. The information is all there. It is simple to take note of the risk factors and follow up suspected cases. The management is not rocket science. But without it these babies almost all die. It is an avoidable tragedy. And one a person does not ever get over. Regardless of the outcome, 6 months from now you will be shocked that you questioned all this. Vasa previa traumatizes every one it touches. Its never over. It doesn't need to be that way. Its only because there is no standard of care. Yet.
Love and hugs,
Cindy
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