DE Successes - And how much to tell your OB

(22 posts)(10 voices)
  1. This may seem like a very weird post. However, I just found out I am pregnant through DE. We have told literally no one that we used DE as we are still undecided about how much and when we will tell our kids about it. And - if we do decide to tell them we think they should be the first to know.

    Because we moved 2 years ago, I need a new OB/GYN and we are considering NOT telling the OB/GYN about DE. We know several physicians (non-OB GYNs) at the nearest and most convenient hospital and the hospital is 100% automated with all their charting. My fear is that I see an OB/GYN who I share the DE info with, and then all of a sudden my neighbors find out b/c their husbands/doctors at some point glance into my chart (possibly innocently, like when I am in the hospital delivering). Believe me - I know all of the legalities around how this shouldn't happen, but let's just say I know stuff about people in my town b/c doctors have told their wives and they tell someone and so on.

    So what are the risks of not telling a new OB/GYN about DE? Our donor was so young (20) that I am not concerned about doing the testing for downs which is the only time I think that info is relevant. Any ideas or thoughts on how else this could be troublesome?

    Thanks for your input and understanding.

  2. Not a weird post at all..... I have the same worries... I am an RN and work in the hospital and you are so right... Yes, there is Hippa laws and "confidentiality" but people talk and thats the truth of it all. I am also pg with DE and I work in the same hospital system that I will deliver.... I am not so worried about the Dr's office but the hospital/chart I am.....I have my first OB appt on Tues and still not sure what to do. My friends here on IVF connections think it is important to tell the Dr everything and it is all "confidential" but working in the field, I know otherwise. It is so tuff to say what to do. This has been bugging me alot and I am so glad that you posted this so maybe we can get some other views about it. Good luck to you.

  3. i would not tell the OB, however, if you are over 35, 40..you will get asked if you want to do different tests. you could just decline based on personal choice. i am disclosing my DE to child and others, and am also a nurse. the egg donor info has been on several of my lab requests, it is in my chart, so there are several people who know that i did DE . although they may not remember in time, they still could read that. and i too live in a small town, one hospital. for myself, i am open to sharing about DE because others have shared info with me, ie. one very important article written in a magazine inspired me, which is a very public thing to do. my story has helped others to get on the DE path, even some nurses at hospital. but disclosure is not for everyone.

  4. Just wanted to say thanks for bringing this up, I never even thought of our DE info getting out that way. We also have not told anyone and that is the way we want it to stay. I know exactly what you are saying about Dr.'s telling there wives and so on.
    This is something I really have to think about.

  5. For me I told my OB from the first visit it was a DE pregnancy and while I wanted to share it with him I didnt want it public knowledge...he was very cool about it. He also understood when I told him I wouldn't be doing any screening stuff except easy ones like ultrasound and such as donor was 25 and myself am 31 yrs old...didnt feel it was necessary. HOWEVER I'm glad now that I told OB about DE as things turned bad in my pregnancy at 25 weeks and I developed life threatening Eclampsia and HELLP syndrome and had to deliver at 25 weeks 3 days a micro preemie to save my life...that OB did it in a confidential status to the Hosp I delivered at as DD (she is ok and 10 lbs 4 oz now) was very sick and was full code at birth and was very close to not making it as she was 1 lb 2 oz...but that info was very helpful to the NICU staff in stabilizing my daughter quickly....it was never spread around OB called head Neonatologist directly. It was never mentioned in our charts it was only verbally communicated. Dont want to scare anyone but had a perfect pregnancy until I hit 25 weeks sometimes things happen you dont plan.

    That being said I'm glad I shared the info with my OB at my first appt.

  6. Bri & Mel: I am so sorry to hear about your scare! Can you tell me why your daughter being a result of DE mattered in the care and treatment that she received?

  7. For us mostly it was the blood products she needed...I lost track of how many she had but I know at least 8 transfusions and we didnt want to use the "bank"...Her blood type is not a possiblity based on DH and mine OB called there and told them Blood type of donor while I was being prepped for ER C-section and instead a friend of our family donated...also her 2nd day of life she was presenting with symptoms of a rare genetic disorder that had cloudy corneas as a symptom and were ready to do a spinal tap on a baby that was 510 grams and based on donors genetics and DH's genetics this rare condition is not a possiblity so they were able to stop genetics from doing painful invasive procedures to rule out a terminal genetic disorder because it wasn't a possiblity and corneas cleared up a few days later on their own. Further down the road during NICU stay they wanted to do a cystic fibrosis workup due to junky sounding in the chest and we were able to rule that out too as Donor doesnt carry the gene neither does DH.

    I should probably should re-word my last post...none of this saved her particularly but it made quick decisions that needed to be made even quicker and saved her from some pretty invasive testing that was unnecessary and would have been traumatic on a fragile micro preemie

  8. My OB knows about us doing donor b/c I've kept her in the loop with my entire IVF journey. It's not in my chart, but it does help her to guide me with my prenatal care. My Peri also knows since we did NT and b/w for genetic screening eventhough we did PGS on the embies. He tested based on the donor's age instead of my age. It's also not in my chart. I did not declare it on any of my medical history for either Drs. Our hospital is paperless, so I can understand your concerns about other Drs. being able to pull up your information. My RE/clinic is also at the same hospital, but my IVF/donor information is only on my paper file with them. It's not in the main hospital system. You can always communicate to your OB or Peri orally and ask that it's kept off your medical chart.

  9. Yes.. so much to think about. I asked my last doctor to keep my DE status off my chart and he said he was obligated by law to put it in my chart once we told him about it. And he is a super cool guy who knew how sensitive this was to us.

  10. i forgot about blood type, if you and partner (if you have a partner) do not have the same type as baby, there may be a question to parents if there was no blood stocked. in my case (no partner) my baby's type will be different than mine, but usually all types are stocked.

  11. I am so confused as to what to do. I know that if I tell my OB "verbally" that it will probably go in the chart somewhere.....Another problem is that I will see 5 different Dr's throughout the pg.... I am 38 so they will want to do tests that I will turn down....The Egg donor has the same blood type as DH....
    I am definately going to tell someday. I want the children(twins) to know at a young age and then they decide who they want to know,etc.
    Like I said I am most concerned about the hospital and what is said there.....
    But then if I dont tell when they do blood tests for Downs, etc it wont be accurate cause they will base it on my age of 38 and not my donor that was 24......This is so tuff for me to know what to do......

  12. koutrouri:

    I don't know if this helps.. but right now I do not plan on telling my OB about DE, for reasons stated in an earlier post. I plan on turning down the 12 week ultrasound + bloodwork that can tell you the chances that the child has downs (it doesn't tell you yes or no - but more like the odds (e.g. 1 in 20,000)).

    Anyhow, my donor was also in her low 20's so: (a) the chances the child has downs is incredibly low, (b) i wouldn't have an abortion at 12 weeks anyhow even if indications were pointing toward downs, and (c) the detailed ultrasound at 20 weeks should also provide an indication of downs which would give me plenty of time to mentally prepare should that be the case.

    I will simply turn down the early testing which is the only testing related to age of the mother. I will do it on principle, citing to my doctor points (b) and (c) above.

    My donor also has a consistent blood type and I can easily get the results of all of the genetic testing my donor did and the results (all negative) in case that was ever in question. Maybe you can get those records, too just in case you feel you would ever need them.

  13. Yes.. so much to think about. I asked my last doctor to keep my DE status off my chart and he said he was obligated by law to put it in my chart once we told him about it. And he is a super cool guy who knew how sensitive this was to us.

    I went in to see my PCP today, and I told him that I'm pg through donor. He did not add it to my chart. He just added to my chart that I was pg. He's also with the same hospital with the linked computer system with my hospital, OB and Peri. BTW... There's record that I've done the # of ER/ET, but there's no mention which cycles were donor on there. He checked for me.

  14. I also am a nurse who works in the hospital where I would have delivered at if hospital birth had become necessary. I did tell me midwife and my GP knows but I asked that it not go on my chart and it didn't. I will talk openly about DE with people if I choose to but it is something I don't want to advertise.

    Now, being someone who works with pregnant women every day, if you are 46 and expecting twins and have no other children, people are going to suspect....

  15. We chose not to tell our OB. I'm pretty certain that most of them will feel that they need to note it somewhere in the chart if you mention it. Once that happens it is in the hospital charts and accessible by a number of people. We had a nuchal scan at our fertility clinic, based upon our donor's age, and asked the clinic not to mention specifics in their report (1/13000 chance of downs would never happen with my own eggs at age 45), but to simply state that the results were well within the normal range and we have been advised not to have an amnio. My OB never asked anything about it.

    Mostly, the fact that we used donor eggs put us at lower risk during the pregnancy so I did not feel that it was necessary for the OB to know. EXCEPT, there are some small studies out there which suggest that the chances of pre-enclampsia or HELLP syndrome are quite a bit higher for a pregnancy from donor eggs than a regular pregnancy. Since I sometimes have high BP measurements anyway, I made a strong point of raising it with my OB as a concern (I just did not relate it to the donor eggs), and we are taking extra steps to monitor that (I'm doing home BP monitoring and I had an extra u/s of the uterine arteries at 15 weeks to see if right now there are any blood-flow concerns and will have another extra one at 24 weeks, in addition to the regular 19 week one).

    Mag

  16. I some how feel like they may tell us it wont be added to the chart but in reality it maybe..... So weird how there are so many different responses from the OB MD. I think in my situation, because I work at the hospital as a nurse and we do not want to tell untill we tell the children first.... I think I should not tell my OB. It bugs me that I cant, cause I do think it helps to tell your Dr everything....I will play this as it comes, if a situation arises I will handle it then. I have my first OB appt on Tues.....

    Mag-were you already released from your infertility clinic and then went back for this test? Just wondering if I can maybe do this, but I have been released from them. I am 9w1d.

  17. I know a lot of people on the board feel extremely strongly about disclosure. I feel it is a personal decision and one size does not fit all. My dh and I plan to tell no one, including children and our OB. Given that, we will only work with a donor where our blood types match up.

  18. Success mentioned.

    It's not just the ob but you'll be faced with the same dilemma with the pediatrician and other specialists your child might need.

    Our girls were born 4 weeks early and spent time in the NICU but three days into it, one of them had a cardiac episode the forced us to reveal the de story to the NICU doctor and our ped. We had planned to tell the ped at some point but it came sooner than we expected. This was nothing we planned but with our daughter being transported to a higher level NICU felt it wasn't right to hold back.

    I should mention that we live in a fairly small community and my dh works at the same clinic as my ob. It was awkward to share such personal info. and a gamble that others would see this in our chart. Maybe people know but if they do, they can't say anything, as they risk losing their job. Most hospital records are computerized so they know who has accessed the records and when. Doctors/nurses/assistants can and do lose their job over looking at records of non-patients -- it's happened in our small town.

    Everyone will have different opinions and the bottom line is you have to do what you feel comfortable with.

  19. koutrouri - yes, we had been released by our clinic, but it runs a nuchal scan program separate from the fertility program. In Canada, nuchal scans are available only for 40 plus women from the public health care system, so there are a lot of private clinics that offer the scans. I just told my OB that I wanted to have the nuchal with my RE (I had to pay out of pocket for it) and she probably just assumed that I felt more comfortable with my RE than with someone I didn't know.

    We picked a donor whose blood group is compatible, and with a completely benign medical history. There is really no difference in the medical histories between our families, so right now I don't see a need to tell a pediatrician anything about it. But there is no doubt in my mind that, if there was some kind of emergency along the way where the donor issue became relevant, we would disclose that this is a donor pregnancy.

    Mag

  20. Quote:
    Mostly, the fact that we used donor eggs put us at lower risk during the pregnancy so I did not feel that it was necessary for the OB to know. EXCEPT, there are some small studies out there which suggest that the chances of pre-enclampsia or HELLP syndrome are quite a bit higher for a pregnancy from donor eggs than a regular pregnancy. Since I sometimes have high BP measurements anyway, I made a strong point of raising it with my OB as a concern (I just did not relate it to the donor eggs), and we are taking extra steps to monitor that (I'm doing home BP monitoring and I had an extra u/s of the uterine arteries at 15 weeks to see if right now there are any blood-flow concerns and will have another extra one at 24 weeks, in addition to the regular 19 week one).

    Interesting...I never knew this and nobody ever told me this...I had a perfectly normal pregnancy until 25 weeks and then developed Eclampsia (had a seizure so beyond preclampsia) and developed HELLP syndrome and delivered at 25 weeks 3 days...no history of elevated blood pressure before just out of the blue and I'm 31 yrs old but used Donor eggs and donor was 26 yrs old....now I'm curious never heard this before?

  21. I have never specifically heard of pre-eclampsia being an issue with donor eggs but it makes some sense to me. Women who are having a first pregnancy or a subsequent pregnancy with a new partner have higher rates of PIH, so it would make sense that donor eggs might pose the same risk. This is due to some sort of immune response that we don't fully understand.

    I was never counseled that PIH was a risk from donor eggs and in practice I have never noticed a correlation (I work in obstetrics). I had my first baby at 39 and delivered at 42 weeks with only a slight increase in BP at the end, that did not stop me from having a planned home birth.

  22. I have seen references to the increased risk of preeclampsia with donor egg pregnancies in various publications, but my RE also did not know much about it. He said that all he had heard is that your risk generally goes down with second pregnancies, but when you use donor eggs your risk is the same as with the first pregnancies. It does seem to have an immunological cause, at least that is what the studies suggest. Here are some links that refer to those studies (the studies themselves are published in some of the health journals for which you need to pay to have access):

    news.bbc.co.uk/2/hi/health/4114006.stm

    bluegrassfertilitycenter.com/eggdonor.htm (see heading "Risk Information")

    Mag

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