23 May 2023 Genetic Bereavement: Managing Loss When Infertility Leaves You Unable to Carry a Genetic Child

Worldwide, 17.5% of adults are affected by infertility, according to the World Health Organization (WHO), many of whom will find out during their fertility journey that their dreams of parenting a genetic child will never be fulfilled. While they may continue pursuing their dreams of parenthood via assisted reproductive technology (ART), they will need to use donor eggs, sperm, or embryos to create their families. Although this news can be devastating, many intended parents overlook the importance of acknowledging and mourning the genetic child they will not be able to have before exploring other methods of family building. For some intended parents, “genetic bereavement” or “genetic grief” can be all-consuming, and finding ways to work through that grief is essential.

What is Genetic Grief When Dealing with Infertility?

Genetic grief refers to the emotional response experienced by intended parents when they learn that using donor eggs, sperm, or embryos is their only option for having a child. In essence, the genetic connection to their babies that many intended parents had imagined is gone. This realization can create a deep sense of loss with feelings of sadness, anger, denial, depression, anxiety, failure, and even shame.

Intended parents also may experience fear of the unknown. Will I bond with my baby? What will I tell my child about his or her conception? Will my friends and family love this child any differently? Will I love this child as much as if I were genetically related? Am I strong enough to pursue this?

Processing all the emotions that come with genetic grief is an important part of the process. It takes time, and the emotions are not linear. They can come and go in waves and don’t subscribe to a specific order, but allowing yourself time to have the emotions is part of the healing process before moving forward on this new path to parenthood.

Letting Go

As you go through the stages of grief, there may be a need for a symbolic gesture in order to begin the healing process. Not being able to use your own DNA can feel like a huge loss, and it is important to acknowledge this loss. Health fertility specialists and grief counselors recommend symbolically “letting the genetic child go.” For some, a ceremony or ritual may help with healing and closure. This could mean writing a poem, planting a garden, donating to a charity in the genetic child’s name, journaling, a balloon release, making a necklace in their honor, or anything that feels right for you. There is no right or wrong way to let go so that you may begin the healing process. It can be as simple as allowing yourself 15 minutes a day to grieve. What is important here is that you allow yourself the space and time to grieve so that, when you are ready to move forward with your fertility journey, you have fully embraced this alternate route to parenthood.

Set Emotional Boundaries for Friends and Family

Taking time to think about and establish boundaries for family, friends, and acquaintances is also important. There will be questions, so it is important to decide who you want to tell, how much you want to tell, and when you want to tell your story.

Family members may have their own feelings about using donor eggs or sperm. Maya Maria Brown, M.A., an infertility mental health expert with a master’s in Counseling Psychology, who is also going through fertility treatments, tells Tilly that when she talked to her parents about using an egg donor, she asked them how they felt. She said, “If this works, you might feel sad that your grandchild doesn’t share a genetic link with you, and I would understand that.” She goes on to say that she was filled with relief and gratitude when her parents said to her, “Any child you have will be our grandchild, 100%. We don’t give that a second thought.”

Of course, not all who are close to you may have the same reaction and may need time to process your decision. There may be insensitive comments or questions, and you may face ignorance, as not everyone is well-informed about assisted reproductive technology (ART) treatments, so decide in advance how to frame the conversation by determining how much you want to tell your friends and family. It’s natural to want to educate others, but not everyone will listen and learn. Even among those who do, there might be mixed feelings about your decisions, so setting boundaries in advance can help prepare you for and cope with any unwanted reactions.

Consider Therapy to Help with Genetic Grief

When your path to parenthood has been planned out in your head your whole life, it is not uncommon to feel a tremendous loss of control when you discover that you’ll need to take a different journey to create your family.

Many intended parents experience stress and anxiety during their fertility journey. Psychology Today states that “about 80% of patients dealing with infertility experience some emotional distress and between 30%-40% experience clinically significant depression and anxiety.” In fact, a study published in the National Library of Medicine found that women diagnosed with infertility had anxiety and depression scores equivalent to those of women diagnosed with cancer, and those undergoing cardiac and hypertension rehabilitation.

Seeking therapy is another way to help with genetic bereavement. Learning to cope with and understand your grief and the stress and anxiety that can sometimes be a part of that grief is an important aspect of healing and acceptance.

In addition to the stress and anxiety that arises from the inability to have a genetically related child, there can also be a strain on relationships and your work environment. A mental health fertility specialist can help with stress levels and be an outlet for your emotions. This is the time to talk and let out any emotions you may be having. It is also the time for you and your therapist to set up goals for dealing with grief. Psychology Today goes on to say that “giving patients an opportunity to hear themselves express their fears and hopes out loud” can be a big help in lowering stress and normalizing the new journey.

Online Support Groups Can Help with Genetic Grieving and Infertility

Bereavement can also be incredibly isolating, even with friends and family support. Online support groups can help. The reality is that coming to terms with using a donated egg, sperm, or embryo is so personal that, unless one has been through it, it is hard to fully understand the multitude of emotions. Online peer support groups can be beneficial as intended parents come together online to share experiences and receive and provide peer support.

Science Direct reports that a study in The International Journal of Nursing Studies found that online support groups offer varied types of support with mutual benefits as well as serving as a “safe haven” with diverse options for struggling individuals or couples. Most intended parents benefit from support from others who understand their fertility journeys. The study goes on to state, however, that support groups can sometimes create a herd mentality with collective negative emotions, and that credibility and misinformation may be concerns. Finding a group with rules and active moderators who enforce the rules is a good place to start. The National Infertility Association, Resolve, has a detailed list of both in-person and online support groups for infertility and loss.

Genetic bereavement is a deeply personal response to loss characterized by a complexity of emotions that can have a profound impact on intended parents. If not addressed promptly with compassion and understanding, the sense of loss created by the inability to genetically procreate can consume all aspects of daily life. While there is no time limit or one-size-fits-all pattern, taking the time to process and acknowledge the different stages of grief is key. In time, you’ll be ready to give yourself credit for the journey you have already been on and recognize that your new path to parenthood is unique to you and worth embracing.