By Nikki Peters, Donor Intake Specialist
Nikki has been with ORM Fertility since 2012 and is currently in the role of Donor Intake Specialist. She has previously worked as Donor Coordinator, but more recently helps incoming donors navigate the application and screening along with participating in community events.
Why does my family health history matter?
When applying to become an ORM Egg Donor, part of the application is filling out an in-depth family health history portion. This step in the process comes after you’ve filled out our basic questionnaire, had your “Welcome Call” that introduces you to the program, and had a look at your own personal fertility. I will not sugar coat it, this is going to be the most difficult part of the application and it will require you to do some digging into your family’s previous and current health information. This can be a very daunting and uncomfortable task if you were not planning to tell your family that you were considering donating your eggs to a loving family. I am going to answer some of the frequent questions and concerns I hear from women who are considering donating their eggs but are nervous about this section of the application.
I have several women who try to complete this section from memory. They think to themselves, “oh Uncle John had really bad asthma as a kid and I know my sister had really bad anxiety in college. I bet I can do this without talking to anyone.” When this happens, we will reopen the Family Health History section and ask you to gather more information on your family’s medical history. We get it. This section is getting personal. Many family members might not want to open up and share this information. It can be easy for our team and intended parents to tell when a donor doesn’t want to talk to their family about their health history. However, not only is this step a necessary preparation for your next testing appointment, it is the foundation of any future child’s permanent health history. That is a big deal. We, of course, do not expect you to have a perfect family or a perfect health history. Actually, when a donor has a “perfect” health history, she is really hard to match. (Learn tips on getting matched.) Why? Because the recipients know that, either 1) she did not reach out to her family or 2) she is not being completely honest.
You may be wondering, “What does this section actually look like and what am I going to have to ask my family?” The section starts out with very basic questions. First, you’ll be asked how many family members you have (aunts, uncles, siblings, and children) and their approximate ages. Being generic here is perfectly acceptable, i.e. “They are all in their 40s.” We are going to ask you to get your immediate family’s birth years, ethnicity, education, etc. The second half of the section gets a little more detailed with an entire list of ailments to go through with your family. This can sound overwhelming, but this list should act as a script for what to ask your family.
Knowing For Yourself
Your Family Health History is great information to have for yourself. Did you know that our genetic counselor will actually tell you your own risk of having these health conditions? Wouldn’t it be nice to know how likely you are to pass on your grandmother’s heart condition to your own child, or what the chances are that you would develop breast cancer since your aunt has it? Knowing your own risk of having a medical condition CAN be predicted by knowing your families detailed health histories! We go through every medical condition as minor as acne, asthma, hay-fever, all the way up to the big stuff.
Start the Conversation
I have many women ask, “How do I get this information?” We ask that you speak with several members of both sides of your family to ask them about your entire family’s health history. Yikes! I know this can sound stressful. I recommend that you first try to reach out to your parents and go through the conditions list with them. This will be a great way to dip your toe in. It will give you a foundation to start the conversation and start gathering what your parents know. Next, I recommend talking to your grandmothers if they are still living. We have found that the matriarchs tend to know a bit more about everyone in the family and what sort of ailments they have dealt with. If your grandmothers are not living, then we suggest asking your grandfathers. Another great resource for these questions is your aunts, however, there is no perfect method to follow.
But, what if you are not in contact with one of your parents, or maybe one of your parents is adopted? If you are not in contact with one of your parents, you can find someone else on that side of the family to talk with. As long as there is someone on that side of the family to provide this information, you can move forward. If your parent is adopted and you do not know anything about that parent’s family medical history, you will then have to ask that parent about their own personal health history and then make sure you collect a thorough family health history for the other side of your family.
You are not required to tell your family that you’re applying to become an egg donor!
One big fear donors have often, is being “required” to tell their family they are applying to our egg donor program when they were not intending on telling them. No problem, we do not require that you share your intention to become an egg donor with your family! We encourage you to be as open as you are comfortable when discussing the topic of egg donation with your family, however, if you do not wish to share this with your family, here are a few ideas of what to tell them:
- You are researching your family health history for a class at school
- You are writing a paper, doing a project, etc.
- You are starting with a new doctor and need to do a thorough health history for your women’s annual health exam.
Genetics Phone Consultation
The next step is the genetics genetic phone consultation during which we review the information that you gave us to make sure we have it correct. If you annotated it was your Maternal Grandmother, but you meant your father’s mother (Paternal Grandmother), we will just want to make sure we have those details straight. If you checked off Osteoporosis but really meant Osteoarthritis, we want to be sure we have that corrected. The consult will be an easy 20-30 minute phone conversation with one of our experienced genetic counselors to review your family’s health history so we can compose your personal genetic risk summary. This summary will be sent to the recipient families that match with you, and you will receive a copy of it as well. If we ask you any questions that you are unsure of, we will ask you to follow-up with us via email when you have had the opportunity to check with your family members.
So, what are we looking for in your family health history?
No one has perfect health. Often donors worry that we are trying to dig out something to deny them. That is simply not the case. Yes, there might be something in your health history that is an exclusion to our program. However, our end goal is to help our families create healthy babies. Which means part of the matching process for our clinic is also making sure the health histories match up for the donors and intended parents. If you have a large number of heart issues in your family, we will not match you with a recipient that also has a lot of heart issues in their family. We do everything we can to try to lower the risk of recipients having a baby with any major medical conditions. That is also why we will do a genetic carrier screening blood test on all ORM Donors called Counsyl. This is a genetic test that tests for over 170 different genetic mutations to see if you are a carrier. One in every four people are going to be positive for something in their genetic carrier screening test. We are not looking for that perfect negative result. If that is you, great! However, most donors will be positive for something. Individually, being positive for something like “Cystic Fibrosis” doesn’t mean that you have Cystic Fibrosis, or that you are at risk of having Cystic Fibrosis. However, if we were to match you with a recipient that is also positive for the Cystic Fibrosis mutation, you would be passing a 25% risk of having the condition to any resulting child.
Learn about your own genetics!
I hope I have eased up any concerns that you have had about the Family Health History information section of our application. One of the neat things about applying to our egg donor program is that we do all of our testings upfront before we match you with a recipient parent. Check out this blog post on, How ORM’s Egg Donor Process is Different. You get all of this information absolutely FREE to you. We will tell you about your own personal fertility, your genetic risk factors, what your carrier status is, and more. With the added bonus of helping create a family and being compensated for your time and commitment!
If you have any questions regarding the ORM egg donor program or would like more information, please contact us. If you’d like to get the process started, apply online today!