Hey there. Welcome back to fertility cafe. I’m your host Eloise Drane. Welcome to Episode 69 of fertility cafe. What if my mission of this show was to help all of the wonderful people who come together to bring life into this world, think about what the future holds. It’s easy to get tunnel vision and focus on the idea of having a successful embryo, getting pregnant or having a baby. Those are all wonderful things, of course, but what happens after you’ve brought that child into the world? According to the CDC, there were nearly 84,000 infants born from egg donation in 2019. While this is wonderful to think that so many families had their dreams come true. We also need to think about the future for those children, their parents, and how will they approach health or genetically affected behavior or learning challenges that may be related to DNA that is not of their own?
Eloise Drane
What happens five years down the road? 10, 15, 25? Have you thought about the conversations you’re going to have or the challenges you may have to face? Thinking about some of those things may affect your decision of whether you will work with the sperm donor or egg donor, and whether you want a known or closed donation. Or if you may receive an embryo through embryo donation, like we discussed in Episode Five, and in Episode 58. On today’s episode, I want to walk you through something that many parents going through assisted reproduction may not think about. What happens years after your child is born if he or she or they start experiencing health problems. So let’s dive in.
Eloise Drane
First, what happens after a child has been born from an egg donation process? Will you get access to your donors medical records? The answer is yes and no. During the egg donation process, your doctors will have a donors full medical records for medical purposes. All egg donors must complete medical health screening, psychological screening and genetic testing. The clinics want to ensure she can donate and that there are a number of factors they would consider when approving the donor to proceed with the donation. Now, what you will get is your donors medical history that is reported on her profile. Her profile will provide you with her specific characteristics, personality, education, her medical history and that of her family. You may also get a copy of her genetic report, but it will be with redacted identifying information. The genetic report will provide details on if she has any hereditary genetics that may be passed down to offspring.
Eloise Drane
As I stated earlier, one of the required screenings for egg donors is a psychological evaluation. You will not be privy to any of her mental health evaluations or her medical appointments. For egg donors, the psychological evaluations are thorough. If she is donating then you can assume she has passed her psychological evaluation and the mental health professional agrees she is sound to proceed. As the intended parents, you’ll get to know the results of the donation procedure that impact you, such as how many mature eggs were retrieved, and so on. But anything pertaining to your donor as an individual will be kept private. Even though the intended parents are paying for the procedure and are obtaining the results of that procedure – the eggs – donors still deserve and have the right to personal and medical privacy. Be sure to understand and if needed, ask your doctor more questions about what will and won’t be shared during the process. This is important for intended parents and donors alike to be aware of so there are no surprises down the road.
Eloise Drane
Now what if your donor’s medical records look perfect at the time of donation, but your donor develops health problems over time? Can you expect to get updates? The short answer here is hopefully. This will depend on a few things. For example, was your donation open or known or an anonymous donation? Some intended parents want a completely anonymous donation in which they have no direct contact or relationship with their donors. Others is not an option. Most egg banks only offer anonymous donations. If that is the case for you, then whether or not you receive health updates on your donor over time will rely solely on how you obtained your donor.
Eloise Drane
If the program you work with keeps good records over time, and if they check in with their donors over time, then you might be able to get health pertinent updates over the years. However, this is not common. Most donors are not contacted for updated health information after their donations. Also, your access to updated information depends on if that program you worked with is still in business when you’re seeking that information. It may not always be available. If you have an open donation where you know your egg donor, or a known donation where you are matched with the donor and choose to share contact information, or even form a relationship with her, talk to her about her expectations around her medical privacy, and whether she would be willing to update you if any medical news arises for her or any of her blood relatives. Make sure your donor knows that you are asking for these updates for the sake of the child that may be born from the donation process so that you can parent that child as best as possible and not to violate her privacy in any way.
Eloise Drane
Either way, I highly recommend that anyone needing the assistance of a donor of any kind, and anyone considering donating, register with donorsiblingregistry.com. If you are an intended parent and you will like your donor to register on the DSR, you can ask her to. Many donors are happy to oblige, and some don’t yet know that the DSR exists. So it’s a smart idea to ask and worst case scenario, your donor may say no, but that’s not always the case. So let’s talk about the worst case scenario.
Eloise Drane
What happens if the child has health issues, and the intended parents opted for an anonymous donation. In this scenario, if you have done an anonymous donation, intended parents can go back to the program in which they receive the eggs and see if perhaps, they have contact information to reach the donor. Hopefully the program has that information and can reach out to the donor on your behalf. Due to HIPAA regulations, they won’t be able to give you the donors direct information. Also, intended parents can attempt to reach their attorney if they had one draft an egg donor agreement between them and the donor. Again, the attorney might insist on being the one to reach out to see if they can contact the donor rather than handing out the donors contact information. If neither of these methods ends up yielding results. And if you’ve already completed your procedure, and you don’t know if your donor registered with the Donor Sibling Registry or not, you can register on donorsiblingregistry.com and hope that the donor may have done or will do the same. The DSR was founded in 2000 to assist individuals conceived as a result of sperm, egg and embryo donation who are seeking to make mutually desired contact with others with whom they share genetic ties. Even if your donor is not on there now, she or other children born from her donation may be in the future.
Eloise Drane
There is also the option of direct to consumer DNA testing like 23andme, and ancestry.com. Although it’s not guaranteed that your donor may have used any of these tests, it could be a way to begin to see if perhaps you can find your donor or even a connection link to the donor. Of course at fertility cafe, we want to set you up for success as early on as possible and help you prepare for everything that third party reproduction could throw your way.
Eloise Drane
So let’s talk about what IPS need to consider early in their IVF journey that may affect their child’s health 10, 20 and more years down the road. As you’re beginning your assisted reproductive journey, as you travel down this path to parenthood. Remember, hopefully you will have your baby, that baby one day will be an adult, that adult is going to be curious and has every right to know who he or she or they are. It can be tempting to make a decision based on your experience of what you think will feel most comfortable with now and as you’re raising your hopefully future child. But that may not always be best. Try to put yourselves in the position of a child who was born with donor material. What do you think he or she or they would want? How would you feel if you were donor conceived?
Eloise Drane
What decisions can you make now that will make the road ahead easier for you and for your potential future children. Also, keep in mind that knowing who your donor is and her knowing you will not diminish your parenthood. Having contact with your donor does not mean that she will have any sort of relationship with your child, especially not a parental one. You can offer your child the option of contacting your donor long into the future. But until that day comes, having contact with your donor is simply a matter of staying in touch with her, maybe every few years, and it’s important for your child’s well being. I wanted to point out your child’s mental health is also a part of your child’s health. And perhaps they may never have a physical issue that you will need to address, but may experience more of a mental health issue due to their creation. Your child will be a donor conceived person, and he or she or they may one day question their genetics. If you have kept it secret all along, what are you going to say? The sooner they know the better. More and more studies are showing that individuals experienced significant distress upon learning about the nature of their conception later in life. Remember, honesty is always the best policy.
Eloise Drane
There are several states that are considering removing anonymous donations altogether. One such state is Colorado, effective 2025. All donations must be open. It provides that once the donor conceived person turns 18, they can learn the identity of their donor. In addition, it sets limits on the number of families who create children through any particular donor and requires the creation and availability of materials that provide guidance for donor conceived people, recipients and donors throughout the process, including disclosure to donor conceived children. All in all, it’s important to note that unfortunately, the fertility industry is not regulated. Fertility clinics are regulated by three federal agencies, the Centers of Disease Control and Prevention, the Food and Drug Administration and the Centers for Medicare and Medicaid Services. These agencies regulate some, but not all aspects of the fertility clinics, and agencies are not regulated at all. There is little to no oversight of long term reporting as well. This can make it very difficult for recipient parents, donor conceived people and donors themselves to share or receive information.
Eloise Drane
Finally, if knowing your donor is not an option, fight for it to be. There are virtually no downsides to knowing your donors identity other than perhaps a bit of emotional discomfort as you get used to the idea, which I highly recommend you work through with a mental health professional until you feel completely comfortable. However, not knowing your donors identity can have massive consequences down the road, including medical, emotional and psychological ones. And ultimately, at the end of the day, you’re making a decision for your child who one day will be an adult, and who one day will most likely have questions that you will have to answer.
Eloise Drane
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
