Hey there. Welcome back to Fertility Cafe. I’m your host Eloise Drane. Welcome to Episode 74 Fertility Cafe. In this episode we’re diving into the issues of privacy and medical records. As an egg donor or a surrogate, your medical history is seen as an open book, IPs and their medical teams want and expect to know everything there is to know about your medical past, often for good reason. But where is the line? It’s a complex issue with far reaching implications for the donor conceived children born from assisted reproduction and the families. On with me today to talk through it all, we have a special guest Nancy Block. An OB GYN RN with 17 years as a nurse and women’s health care, owner of an egg donor and surrogacy agency and co founder of the National Surrogate Record Review. Nancy welcome and thank you so much for being here.
Nancy Block
Thank you, Eloise, it’s a pleasure. And I always love talking to you.
Eloise Drane
Thank you likewise. Okay, so first, let’s start with your story. How did you get involved in the fertility industry?
Nancy Block
Well, I was an OB Gyne nurse for a very long time. And a close friend of mine started a program because her husband who’s Inari needed someone to recruit egg donors and surrogates. And after working at the hospital, I worked at a large hospital, we did about 25,000 deliveries a year by the time I left, she suggested that I look into working with egg donors and surrogates. And I did. And I found it fascinating and intriguing. And I always wanted to do my own thing and start my own business. And then I found the people, the resources that I needed and started in January of 2000.
Eloise Drane
Wow. Oh, goodness. And obviously, I know you do quite a lot from being an experienced nurse to running an agency to also now founding or CO founding, the National surrogate record review. Tell us about the NSRR and what led you to create it.
Nancy Block
Well, my partner Mark Silverberg is an MD. And he also happens to be a DDS, and went to school for oral surgery. So he’s got quite a few degrees. And he’s also an inventor, and very creative. And he and I had always talked about what I do, and how best to accomplish the cycles, the journeys, and the experiences that people have. And really the first step to accomplishing success, we believe, is to have a medical evaluation or a medical summary. And even though I had been doing them, I’m a nurse, and the credibility I think, lends itself toward MDs versus a nurse or someone who’s coordinated or someone who’s worked at a fertility clinic. So Mark and I decided to partner and form National Surrogate Record Review, which we did in 2021.
Nancy Block
And, you know, knock on wood, it’s been great. And we also think it helps push surrogates through in this climate these days. There are a lot of delays with everything. So when an RE reproductive endocrinologist sees a summary that’s signed by an MD, we feel that that pushes that candidate, to the point where she needs to be accepted or rejected. We don’t, National surrogate record review, NSRR.com doesn’t typically say whether or not the candidate is acceptable, or rejected. So what we do is offer, based on records that we get from the professionals, offer all of the information medically that’s necessary to carry out a cycle that’s hopefully successful.
Eloise Drane
Okay, so let’s dive into the issue of privacy and medical records now, specifically regarding screening and choosing donors and surrogates but, you know, probably for a lot of people, they hear the word HIPAA all the time, but don’t necessarily know what that means. So first, let’s start off by explaining what is HIPAA?
Nancy Block
Well, as you know, HIPAA is privacy. And the person who is going to the physician has to sign a form stating that someone else is also entitled to know more about his or her history based on signing this waiver, this HIPAA form. So it’s really a privacy form that says that this person at this contact can find out information about your medical history, it doesn’t mean that they will know your social security number and all of your identifying information. But whatever is pertinent to whatever is going on at that point with that professional physician, or mental health professional, or whomever they’re seeking help from.
Eloise Drane
So what type of information is shared to parents on donors and surrogates. So obviously, you guys review medical records, what kind of medical records is gathered to then be reviewed, and out of those records, what is shared with intended parents, and I’m not just speaking from NSRR. But even as the agency owner for PLS
Nancy Block
So it talks about the types of pregnancies they’ve had, what their wishes are for the journey, how many children they have, the state that they live in, maybe the city depending on if that’s a very small city, we may not share that information. But we don’t give out last names. We don’t give out socials, we don’t give out email addresses. None of that is really shared with intended parents, and the socials never shared. But the other information contact information is shared with parents once a contract is signed, which is after a medical review is completed. Because we don’t start the legal process, most agencies don’t until after the surrogate is medically cleared, which is why these records are so important to get. And to summarize for the reproductive endocrinologist so that they know that they’re working with someone who is either qualified or not qualified.
Nancy Block
A lot of information is shared. But basically what we do, how we operate at the agency, the surrogate agency, because I don’t recruit donors anymore. The surrogate agency will give the parents a profile without identifying information. So we share all of the medical information that the surrogate shares with us, but we don’t share those actual medical records. As matter of fact, the surrogate when she meets with the psychologist won’t even see her own psych eval, we get a copy of it, and the doctor gets a copy of it, the parents do not see it. So the parents are entitled, and the surrogate is aware of because they sign a release with the agency stating that the parents will see information that is provided on their profile. And their profile is really an application.
Eloise Drane
And what kind of records are they?
Nancy Block
Prenatal and delivery records from pregnancies that they’ve had. And some are easy to get some are difficult to get. It depends on how old these records are. If they’re quite old, they may either be in hard storage, which is almost impossible to get anymore, because nobody does that. Or if the doctor retired or if the hospital no longer carries those records and we don’t get them. At times with future records. We can get a summary of previous deliveries. But what’s most important is that flow sheet from when a surrogate was pregnant, because we’re looking for things like was she preeclamptic, did she have blood pressure problems? Did she bleed? Did she have gestational diabetes? Was she on insulin? Does she have a thyroid dysfunction? Does she have mental disorders? Does she have emotional instability? So all of those things are usually carried from one record to the next. Not always.
Nancy Block
But whenever possible. We try and find that information out from pregnancies, and then deliveries. Deliveries, we are looking as an OB nurse and a doctor, we’re looking for things that would make it difficult for the surrogate to carry a baby as a surrogate for someone else. And that would be something that would be high risk. And we wouldn’t endorse that. Even though we don’t endorse or decline a surrogate. It’s really up to the RE to make that decision. We point out did she have a difficult delivery, did she have something called Shoulder Dystocia which can make a baby get stuck. If it was with her first pregnancy and she had successive pregnancies that were very normal, chances are it’s fine. If it was with her last pregnancy and she had lots of high risk problems, the doctor that these parents go to, may not want to work with the surrogate because it would be too high risk.
Eloise Drane
Okay. Now, is it reasonable for and I know we keep talking about just surrogates, but donors and surrogates to expect some degree of privacy, particularly for health related issues that may not seem relevant to the task at hand, maybe they had gallbladder removed.
Nancy Block
It’s funny that you ask this question because I was just asked this yesterday, I was talking to a client. And they said, the surrogate really doesn’t have very much in her history, her medical history, and the intended mother is not a physician. So she’s not in tune to everything, even though I mean, she’s quite bright. But I said she really doesn’t have a lot of medical history because she’s young. She’s had two normal pregnancies, and she doesn’t have significant health problems. Her BMI is quite low, I mean, within the normal range, but she doesn’t have a lot of medical history. So I think what’s expected of an egg donor or surrogate is anything that would be significant. And, you know, having your gallbladder taken out, for a pregnancy, I mean, is really not super significant. But any medical history, that anyone’s gone through, any surgical history that anyone’s gone through, is reported when we do our summaries on National Surrogate Record Review. So even if it’s not significant, it’s still mentioned.
Eloise Drane
So what about if, I’m just trying to think of different things that
Nancy Block
Well we’ve had surrogates where they’ve had cancer when they were children, and they had clearance because they had treatment, but it didn’t affect their reproductive function, it didn’t affect their ovaries, it didn’t affect their uterus, it was when they were quite young, it was, you know, maybe 15 years, 20 years prior to. And so we would get clearances or ask for clearances from an agency that we’re working with, from the oncologist to state that she is healthy enough to carry a pregnancy as a surrogate, even though she had that in her former history. That’s kind of rare.
Nancy Block
Actually, we did have a surrogate who had cancer when she was young, but she’s totally fine. And it wasn’t significant. And it didn’t affect the pregnancy. And so she was cleared. So I think those kinds of questions are good to ask. And there are some medical issues that certainly parents are entitled to know about. Autism, I think is one, if a surrogate has a child with autism, we recommend that that surrogate have a genetic counselor. We don’t feel that there’s a significant risk, as we’ve been told by genetic counselors, but it’s one more safety net and it’s one more clearance and it’s one more area for people to feel comfortable in working with the surrogate.
Eloise Drane
Gotcha. Okay. So how does it work in gathering the records for the donors and the surrogate? Like, who actually does that? Is it the surrogates and donors sending over the records?
Nancy Block
Typically, what happens is when we at National Surrogate Record Review, the clients that we work with either who are agencies, intended parents or fertility clinics, either have the opportunity to have the hospital and doctor send over records, but the individual is not able to send over records because they can modify them, they can redact them, they can change them, they can omit, they can modify. And so we rely on the professionals to send over any records even though some of them are hundreds of pages of repeats. We only accept records from professionals. If an agency, intended parents or fertility clinic wants us to obtain them. Then we simply get a request of information from the surrogate, which is signed by her for the hospital and the doctor that she worked with for each pregnancy to get those records. We don’t accept them as an agency or as a record review company. We don’t accept records from an individual.
Eloise Drane
Okay, so now let’s talk about the medical privacy during the donation or surrogacy process. So, you know, obviously we’ve passed all of the medical screening, we have the legal contracts, and now we’re starting the process. Do IPs have a right to know everything that’s going on with their donor/surrogates body and or is the donor/surrogate entitled to some degree of privacy?
Nancy Block
We do know that anything relevant. And this is as a medical professional, as an agency owner, as a reproductive nurse, as an OB Gyne nurse, and now as co owner of National Surrogate Record Review, we do know that a donor and a surrogate are entitled to certain layers of privacy. And a lot of that will also depend on the treating physician too, as well. You know, some surrogates may say, Oh, I’m an open book, you can tell them anything. But really intended parents are entitled to know what’s relevant, as far as the pregnancy goes, or what’s relevant as far as how that donor is stimulating during her cycle.
Nancy Block
So they do get updates and those updates, those medical updates should be shared by the doctors offices, not by the agency. We’ve never as an agency shared that and at Record Review, we don’t share anything with intended parents. That’s not our role. It’s really the medical professionals role to share. Like I said, what’s relevant for each cycle, for a donor and for a surrogate. And the baby, I mean, the information about the baby related to surrogacy, it’s their baby, they’re entitled, even if they worked with an egg donor and a sperm donor and a surrogate, it is their baby, though the surrogate sign off that she’s doing this as a surrogate, but the parents are entitled to know what’s going on with the baby.
Eloise Drane
So what about if they’re at a doctor’s office, and during the doctor’s visit, when is it okay for a surrogate to say, okay, you know, I want to have privacy with my doctor and speak to my doctor, you know, alone, versus, you know, an intended parent that’s there, whether that’s FaceTime, or it’s physical or whatever, does she have a right to request that information or the right to say, you know, what, I want to have a few minutes alone with my doctor in privacy without the intended parents even though I’m carrying your baby for you?
Nancy Block
Well, it’s funny, because I’m going to twist that question around a little bit also, because sometimes it comes from the physician too. The physician may be uncomfortable about sharing certain information, may want to talk to the surrogate, or the donor, but talk to the surrogate before she talks to the intended parents, or does a FaceTime with the intended parents. So I think it’s a conversation, it doesn’t mean that someone’s hiding something, I think it’s a conversation that the professional has with their patient first, and their patient is that surrogate or that donor.
Nancy Block
And so whether that is initiated by the surrogate, or the doctor, I don’t think it really matters, I think, just getting the point across of what the surrogate is comfortable sharing with the parents and what the doctor is comfortable talking about with the parents. And of course, no one wants to give negative information, bad information, you know, heartbreaking information, initially. So sometimes some doctors will do, you know, listen to a heart rate, do an ultrasound, a little bit of an ultrasound before they bring the parents either in the room or on the zoom, or on FaceTime. So it’s a conversation that goes both ways. And I think it’s kind of new for some doctors, we guide them as needed. And some doctors just kind of take over and do what they’re comfortable with.
Eloise Drane
Yeah. And I think it’s important to also point out that when even a surrogate, granted yes, she’s carrying somebody else’s baby, but even when she goes to the doctor’s, she’s the patient, not the baby. And so that doctor is obligated to her first before he or she is obligated to inform the intended parents about anything.
Nancy Block
Exactly. And as an agency, what I say to any surrogate is if there’s a problem, whatever that problem is, call your doctor first. Then, you know, depending on the relationship that they have with their parents, their intended parents or the agency, then please call the parents or the agency. Sometimes they’re overwhelmed. Sometimes they’re scared. Sometimes they don’t know what to say to the parents, so they call the agency which is fine. It’s not the agency’s obligation to give medical information to the parents. It really is the doctor’s responsibility, and it should be relevant to the baby and the pregnancy. Anything to do with the baby in the pregnancy we feel, I feel as an agency owner, the intended parents are able to know. But of course, we don’t want to alarm anybody. There’s something that’s going on, we’d like to let them know because we don’t want them to be shocked if something does happen in the future. Like I said, that really is a doctor’s responsibility or the medical team that is treating that patient. And like you said, that patient is the patient who’s carrying the baby,
Eloise Drane
Perfect. Any final thoughts that you’d like to share with the listeners?
Nancy Block
I think it’s really important to get medical records reviewed first, because that really is the pain point. Even if you’re passionate about working with somebody, even if you find somebody who’s just absolutely lovely and warm and kind and sharing and giving, they may not know all of their medical history, even if they’re medical professionals. So we need to do a summary and doctors appreciate a summary from a doctor. And it does help push that surrogate candidate through a little bit quicker because there’s a lot more credibility with an MD signing on the summaries, versus someone else who does it, even someone with experience as an OB nurse.
Eloise Drane
Yep. Absolutely. I agree. Well, Nancy, thank you for being with me on the show today, we’ll make sure that we put all of your information and information about NSRR and pls on our show notes so that people can reach you if they have any questions.
Nancy Block
That’s great. NationalSurrogateRecordReview.com is always here to help, we can answer questions, talk about our summaries, and you know, obtaining records as well. We can do both.
Eloise Drane
Awesome. Perfect. Thank you so much for listening. If you found this episode helpful, please rate Fertility Cafe on your favorite listening platform, and share this episode with anyone you think could benefit from hearing it. Thank you so much for joining me today. Until next time, remember, love has no limits. Neither should parenthood
