As described by many Genetic Counselors, the primary focus of Genetic counseling is patient experience and care supported by providing knowledge related to their genes. Today’s story is inspired by one such narrator who comes to know she is now classified as an NPE (Not Parent Expected).
Genetic testing and emotions surrounding this decision can be quiet complex and nerve-racking. This is Maggie’s story (owner of “The Mindful NPE”) who received a lovely and thoughtful gift of “Ancestry Genetic testing” from her adult children’s for herself and their father on Mothers day and Fathers day. Maggie and her children’s father do not live together, however Maggie had very well expected that her children’s dad is Ashkenazi Jewish. She was also confident before the test that she would be a 90 percent Irish and 10 percent English type of results. Although she was excited for the test and was looking at doing it as a fun activity, she wasn’t aware of what was to come next in her life!!
With a day or so passed and while Maggie was waiting at a restaurant for lunch with her children’s father, she received the results over the phone probably in an email/text and it was revealed very surprisingly and shockingly against her expectations that she now identifies as a 50 percent Ashkenazi Jewish and so termed as Not Parent Expected. This wasn’t what she had expected in her wild dreams although she knew she had once told her then husband of how she think she has traits of a Jewish (though this was said as a fun conversation). She immediately went to he washroom as she couldn’t believe what she had just read and needed a moment to take it all in. She also said how she has always been a curious for information sought of person and so she immediately rang the clinic (23andme) to know her detailed report of testing. What stood out next was that she shared 1301 centimorgans in common with a person’s name that she doesn’t recognize and never heard of. She had only expected to see her Mom, her close siblings and her fathers side family, this was all there along with that one unidentified and mysterious name. She then immediately decided to get in contact with this mysterious person through ancestry and surprisingly he connected and was as equally surprised as her and said he did not knew her either. What is beautiful to see here is how they strangely connected and then discussed over to discover their family history. She described her interaction with this man as a warm and lovely meeting.
Apparently his grandfather is her biological father and this family of his were dear friends of her family. Her mother worked for him for 31 years.
How would have Maggie felt learning about her biological father? how many questions would have this revelation raised in her mind??
In her words she felt really “untethered, ungrounded and as if she was floating. Its been 6 months since she got to know and she realizes how much of our identity is linked to our memories. She was raised by a loving mother and father and she has got to know that this man was also very loving. She had many questions and doubts in her thoughts of why didn’t she knew, why no one knew. She explained how she initially felt that knowing this was neither exactly good nor felt that bad. She found it difficult to hold this reality in herself and decided to began telling people about it. This didn’t work as expected and she described how even though everyone showed sympathy and support she could sense they weren’t really comfortable. She then planned on making everyone aware that she is now going to reveal something deep, important and sensitive to discuss and that they please just not say anything and only listen.
Now, all of her biological father’s offspring know and her family knows. She goes on to express how she feels “it is a great relief” to know and she made up her own kind of story to come in feeling better with this new part of her life. She also found it very fascinating to see her father and biological father both in her wedding album photographs. She wondered if they knew each other and if they knew about this entire story and she said to herself that if they did, she was even more proud of her father who looked after her with love and care always.
What NPE means to her?
An event designation eventually used by Genetic counselors to explain unexpected break or outcome of paternity, actually called Non- Paternal event. It really affects cases such as adoption or when a new born gets mixed at hospital.
Within 24 hours quiet quickly she also found out a huge support community, she says a secret Facebook group dedicated specifically to such NPE cases and several people who have experienced similar outcome.
Interlink between Ashkenazi Jewish and BRCA gene mutation:
As she went on to do further research on this discovery, she learnt that her biological fathers sisters died at young age and she wanted to know why and she couldn’t find this from the family whom she did approach. She then found some research studies from before and perhaps started by someone who probably uncovered BRCA gene mutations and its commonness in Ashkenazi people. She also had a suspicion that maybe one of her aunt had died of breast cancer. Meanwhile information came to light that 80 percentmwith BRCA gene mutation would have breast cancer and the risk is 10 times more in Ashkenazi people. She then decided to get herself tested and enroll in studies and recollects how the process was very long and asked repeated questions. She was eligible for the study as she was 50% Ashkenazi and this was a pilot study from 2017.
Her test results did not have any BRCA mutations and she feels lucky that she got to know the results as this not only means she is not carrier but is good to know for her children of whom her daughter is 24 yr old and is good info as now even her children are 75 percent Ashkenazi Jewish and also eligible for the study.
Knowing her now new identity has made her feel like a warm uncovering and she does feel she resembles a Jewish in many of her acts and beliefs. She says “it feels like an honor”.
Her advise to people who recently found out they are NPE.
People who take these tests she hopes that more control is put around aspects of making them understand the possibilities and implications of ancestry testing so before they get the results they have both their feet on ground and are prepared for the unexpected or traumatic results. And once they find out they are NPE, to not discount of those feelings and go look for support groups and the secret Facebook group where they can find immense support and guidance to talk to and maybe also see a therapist who understands ancestry testing and its implications.
With this beautiful and roller coaster experience and story of Maggie’s now reality, I would like to comment on the aspect of how important it is to know as a genetic counselor, the mind frame and strong expectations that our clients/patients come with and how they might not really be expecting any major surprises. Right education and socio-psychological aspect of preparing them before the test is very crucial and also supporting them throughout the journey of this revelation.
I would like to thank Patient Stories and Grey genetics for the inspiration behind writing on Maggie’s journey and would also like to thank The Mindful NPE for sharing her beautiful experience with our community.
Until next, I Disha signing off!! stay tuned for an exciting little project of mine where you will be hearing from guests far away and all around.