Today's followup ultrasound confirmed that I have vasa previa. What is it, you ask?
Usually the baby's umbilical cord implants into the placenta. Rarely, it implants into the amniotic sac membrane (the "bag of waters"), so that the three blood vessels bringing nutrients and oxygen to the baby must travel a short distance through the thin membrane to the placenta. Even more rarely, these vessels sometimes travel through membrane in front of the cervix (opening of the uterus, where the baby will come out). That's vasa previa.
It's very rare and, undiagnosed, highly deadly for the baby. The primary danger is that when the bag of waters breaks during labor, the unsupported, exposed blood vessels will also rupture, causing the baby to lose a substantial amount of blood. Severe damage and death can occur within minutes. A secondary danger is that even if the blood vessels remain intact, the baby's descent will compress them, cutting off his oxygen supply.
The recommended solution is to ease up on activity, go on complete pelvic rest (that means no sex), and plan a c-section by 36 weeks of pregnancy. There goes my lovely Dutch homebirth. Here comes my worst nightmare: I truly fear c-sections. And I'll have to trade my midwives for hospital doctors for the appointments in these last weeks of the pregnancy. You know, I'm really just kind of done with hospitals.
But it is what it is, and a healthy baby born a month early by planned c-section in a hospital so totally trumps a dead baby born spontaneously at term after a lovely vaginal homebirth.
Now I just have to make it through the next 6 weeks without the amniotic sac spontaneously rupturing while I'm, say, standing in the supermarket. Not as certain as it sounds: my water broke at 32 weeks with #2 (he of the birthday wishes).
Friday, February 01, 2008
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8 comments:
Oh darn, that must have been a scary find. NOT what you wanted ever, but especially not in these circumstances.
There is a Dutch group appearantly (http://www.vasaprevia.nl/), maybe that helps.
I'd skip the supermarket, just in case. Doesn't AH deliver where you live?
Dutchmarbel, thanks for the link--indeed I've been scouring the 'net since we got home. Not exactly reassuring reading, but it does make me glad we got the 20-week ultrasound (I'm not much on interventions during pregnancy). I can't imagine anything worse than a textbook healthy pregnancy and birth where the otherwise healthy baby dies because this didn't get picked up.
Actually, I've been using AH for a couple of years now :). Wonderful service. But of course it doesn't matter whether I'm in the supermarket or resting at home on the couch when my water breaks; either way it'll be too late. I've read that some doctors recommend the mother be hospitalized for the entire third trimester for just this reason.
Did just read a study where three of eighteen VP cases resolved themselves late in the third trimester and the women went on to have uneventful vaginal deliveries. So we can cross our fingers, who knows?
I'm crossing my fingers anyway of course ;)
The link was also because they have chatmeetings and fora (international) so you can discuss with people who are (or were) in the same situation. I'm a firm believer in 'ervaringsdeskundigen' (experience-experts doesn't seem a good translation and 'bought the t-shirt' might be too cryptic).
I never liked interventions (was 36, 38 and 40 when I had my kids) but I did appreciate the 20 weeks ultra. Though I understand from the sites that you were lucky, even with the ultrasound, that it was diagnosed.
Will you be hospitalized? I think it also makes a difference how far the hospital is and wether they will have a gynaecologist 24/7. Otherwise it might not make much difference.
Congratulations on your prenatal diagnosis!! I wasn't so lucky to have that precious gift. You seem to know an awful lot about vasa previa already. Thats great!
I also hoped for a homebirth. After having 3 children in the hospital I was more afraid of the interventions than the labor. But it wasn't to be. If you rupture at home your baby will not survive. Push for hospitalization in the 3rd trimester (usually at about 30-32 weeks unless you are having other problems that increases the risk of rupture). If you do rupture and are already in hospital your baby has a far greater chance of surviving.
As Secretary of the International Vasa Previa Foundation (IVPF.org) I can tell you that we don't have one baby in our records that has died after following our recommendations. Not one. Thats quite a statement, I know, especially for a condition that has an up to 95% infant mortality rate if undiagnosed or inadequately managed.
Feel free to contact me if you wish. Cindy.Paris@vasaprevia.com and I'll be happy to send you lots more information. I'm also including some links below. All the best to you, and once again -- congratulations! I don't like C-sections or hospital births either, but this is your baby's ticket home.
Cindy Paris, IVPF Secretary
Mum to Nathan Elliot Paris ^i^
http://NathanParis.com
Risk Factors, Testing, and IVPF Management Recommendations for Vasa Previa:
http://IVPF.org/education/recommendations.htm
Sign up to receive the free IVPF newsletter:
http://groups.yahoo.com/group/IVPF
Vasa_Previa email group:
http://groups.yahoo.com/group/Vasa_Previa
Medical Resources
http://IVPF.org/resources/resources.htm
Slide Show on vasa previa
online - http://IVPF.org/Docs/IVPFslideshow.htm
IVPF Brochure
http://IVPF.org/Docs/IVPFbrochure.PDF
Frequently asked questions about vasa previa:
http://IVPF.org/faqs/faqs.htm
Sophie's Walk for Vasa Previa
http://SophiesWalk.org/walk
Help us research vasa previa by filling in the IVPF research questionnaire:
http://IVPF.org/education/questions.htm
Save babies from an untimely death due to vasa previa by JOINING the IVPF as a participating member!
Visit http://IVPF.org/contact/member.htmVisit http://IVPF.org to learn about vasa previa. It only takes a moment to diagnose life...
Dutchmarbel, I checked out the forum but unfortunately there was only one actual thread there with two posts. :( After I get over the shock of the diagnosis I may try the yahoo group.
Our hospital is just 10 minutes away by car, but even that means 30 minutes before an emergency c-section could be performed (getting there, getting into the ER, epxlaining what we need . . .) The thought of a month or more in the hospital makes me gag; aside from, well, being in a *hospital*, I also have a webstore to run (that'd have to close temporarily), family to keep in clean clothes, all that jazz. But the alternative is too terrible for words.
Cindy, thanks for your comment and the links. I'm so, so sorry about your Nathan. We have some similarities too, this is also my fourth, also with my second husband, also coming out of left field long after we were Done Having Kids. Right now I'm in shock about this diagnosis. It was first mentioned at the 20-week ultrasound, but no one told us what it actually meant and the attitude was so laid back that I didn't even bother Googling it at the time. After today I can't believe they didn't make me schedule the followup ultrasound right away, but let me wait ten weeks. In retrospect I'm glad we didn't know how serious it was during those ten weeks (since nothing went wrong), but it also makes me queasy to realize that had I had any bleeding in those weeks, we would have been too late: I'd have called the midwife, who'd have said "how much is it, come in in a couple of hours ...."
The feeling that I'm sitting on a time bomb is so hard. We've cancelled plans with friends who live an hour away because I'm not comfortable with the idea of being any farther from the hospital than I already am, or even being closer to a hospital where they don't know us and our situation (precious minutes lost explaining what's going on. . . )
We haven't fully decided what to do about the hospitalization thing; the news is just 14 hours old and we're still in a daze. And though the doctor today is the first who gave us clear information on what vasa previa is, she didn't make it sound as serious as it is (we figured all that out when we got home and searched the 'net). I just have to wrap my brain around this. And get over the shock that another honkin' big drop of rain is falling on exactly the same spot.
I just found my way in here tonight from mdc and I wanted to say, first, I am sorry that you are dealing with this stress right now. I have been there with being low intervention & turning high risk and having a necessary c/section the year after losing a child ( very different situation, but I can relate to being pregnant and grieving). I would be happy to give you any tips I can to make a c/s as pleasant as possible. You can email me at frugalbeer@yahoo.com. (you don't have to post this comment if you don't want to of course).
I am wishing you the best, I am hoping your vasa previa does work itself out and you can avoid a c/s. If you do need one, it really can be a good experience with lots of reverence for your baby & your family.
Best wishes to you all.
Grayson,
Ik hoorde net van mijn moeder van de vreselijke diagnose, ik had er nog nooit eerder van gehoord. Ik vind het zo erg voor je (jullie). Inderdaad: hoeveel moet een mens verdragen.... Ik hoop zo ontzettend dat alles goed komt. Ik snap dat je niet zit te wachten op een keizersnede, ik heb er zelf 2 gehad, niet makkelijk. Het herstel is uiteraard langer, maar ik heb er vrede mee. Gelukkig dat het bestaat en de mogelijkheid biedt om onze kindjes te laten leven. Nogmaals; ik bid dat alles goed komt voor jullie. Veel sterkte.
Rian
Dear Grayson,
I'm glad that you are getting a plan in place. You are sounding a bit better. Please believe me when I say that vasa previa doesn't have to be the killer it is known for. We have some 2,000 cases in our records and not one baby in our records who was diagnosed and appropriately managed died because of vasa previa. Not one!
Yes, it is possible that vasa previa can be managed as an outpatient in a very few select women. These are women who do not efface or start to dilate before term. As you can imagine, there are few women like that! Therefore, unless the cervix is at least 4 centimeters AND the fetal fibronectin testing is favourable for outpatient management, it shouldn't be tried. The hospitalization IS very important. Babies who rupture in hospital have a much greater chance of surviving because they can be delivered immediately and given life saving blood transfusions without delay. Ten or fifteen minutes is too long for a vasa previa baby.
In my experience, the water doesn't break before the rupture, it happens at the same time. Think about it. Those blood vessels are not meant to support anything. Vasa previa women can sometimes rupture their membranes earlier. Though, (important note here), they usually don't unless the mother's body has begun to prepare itself for birth.
IVPF recommendations are based on the most current and comprehensive information and research available. Studies prove that this management works (hospitalization at about 30-32 weeks and C-section delivery at about 35). I can send you copies of these studies if you like, and also put your doctor in contact with one of the most published experts on vasa previa. While the outcome is good in situations like yours (some 100% good!), it is nothing to mess around with.
Cindy.Paris@vasaprevia.com
P.S. If you were referring to our forum, it is brand new. Thats why there aren't many postings there. We had a lot of trouble with spam in our old forum and had to shut it down. I suggest the Yahoo Group. http://groups.yahoo.com/group/Vasa_Previa There are a lot of people there in your shoes and you will get plenty of support and valuable information. Vasa previa isn't as rare as you would think.
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