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A Doctor, Patient and Dad Tells His Tale

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baby in dad's handsBy Mark Leondires, MD

As a reproductive endocrinologist at a large IVF practice, I am responsible for our third party reproduction program where we have an anonymous egg donation program.  Over the years we have often discussed; what do children born from donor sperm and donor egg need to know (and have the right to know)?  Now, as a parent of a donor-conceived child, my opinion on issues of disclosure has developed further from both a professional and personal perspective.  I believe that parents should be prepared to disclose donor information to their children. 

Occasionally, the concept of donor conception disclosure and rights of the child come up on the news or on the web.  This led us to the development of an option for our intended parents we call the “the open door program.”  This allows intended parents to use an attorney to hold their anonymous donor’s contact information securely till the child reaches the age of majority.  Therefore, a young adult conceived, using an anonymous egg donor 20 years in the future, can have a structured anonymous conversation to obtain more information from their egg donor, update their medical family history, and will know of any half siblings.  We felt that for a 20 year old to have only the donor profile paperwork may not be enough for some young adults.  After all, this is part of who they are. 

As a physician, it is interesting to have conversations with egg donors and discover that as young women (between 20 and 30 years old) they are very comfortable with being “open door” donors.  They understand that if the shoe was on a different foot they may want to know more about their family history if they were conceived through a donor.  They are not, for the most part, very concerned about the privacy issues.

I have always held the opinion that disclosure is not only for the best of the child, but is best for the family, and I discuss this frankly with my patients.  It seems that secrets are very hard to keep and this applies especially to family secrets.  I can't imagine being a teenager or young adult only to discover that my parents, the people I trust most in my life, were not honest with me as to how I became part of the family.  Furthermore, with the explosion in DNA finger printing it is highly likely that whether families choose to disclose genetic heritage or not, this information will eventually be discovered.  When I have these discussions with patients who are hesitant to consider full disclosure with their child, I try first to focus on their desire to be parents and the desire to have a healthy, emotionally adjusted child and young adult in their lives.  It seems very clear that children, first and foremost, need to be loved and wanted. If loving parents tell a story of disclosure at age-appropriate times they will truly understand these concepts.  In addition, they will understand the lengths their parents went to bring them into the world.

What has changed my life over the past two years is that I am now the parent of a donor-conceived child.  He is a joyful, loving toddler and his birth has changed the tone of my discussions regarding third party reproduction.  As someone who wanted to be a parent for many years, who then became a patient of an IVF program, went through the process of picking an anonymous egg donor, experienced a negative pregnancy test, and finally had a child with a gestational carrier, the issues of disclosure are front and center.  I want to give him the opportunity to grow up knowing who he is and it is my responsibility to share with him the rest of his genetic family history.  I am already a little stressed and excited to explain to him when he wants to know where babies come from and that a wonderful woman helped take care of him for us for nine months.  I want him to know that she gave us updates and was a wonderful “Tummy Mummy.”  Then the big conversation comes when he is 9 to 10 years old and wants to know more.  We will explain to him why we picked out the egg donor; share with him why we thought she was special.  Finally, when he is ready, we will share with him the knowledge that he can talk to his donor after the age of 18 to learn more about that genetic side of his identity.   I want to empower him with as much information as possible as he travels through his own life.  While this future connection is a little bit scary, it also will be amazing to hear about his donor.  Hopefully she is healthy and well.  I will ask him to thank her for her donation that brought him into our lives.

When I talk to intended parents, their hesitation surrounding the issues of disclosure is focused around what others will think, a sense of vulnerability, and a desire to protect their child.  If we jettison the concept of what others will think and understand that all parents are willing to be vulnerable to help their children, disclosure may be the best option for their child.  It may be, that the best way to nurture, protect, and love a child/young adult is to give them information about who they are with complete honesty.  It is my opinion that to take the risk of telling your child about their genetic heritage at age-appropriate times is well worth it. In fact there is data supporting that they will continue to develop healthy and well.  This especially seems like a risk worth taking as compared to risking the inadvertent disclosure of information hidden from them for their entire life.  I certainly cannot imagine being a young adult or teenager who discovers that his/her parents, had been keeping this secret from them.  I would wonder why the secret, why the shame, and who am I really?  What other secrets are there?  I cannot imagine being the parents in this situation knowing it could have been handled differently with trust, love, and honesty. 

As a teenager and young adult we all struggle to understand who we are and who we are going to be in this world.  To discover accidentally at a fragile age of development the “secret” of donor conception could be very difficult.  So I ask intended parents to consider what is best for the child when they consider the issues of disclosure.  How would they feel if they found out a family secret that was critical to who they are as a young adult? 

With the expansion of the utilization of advanced fertility therapy, thousands of children are being born using donor gametes.  Knowing that they are not alone and most of all that they were very much wanted and are very much loved is the key to their emotional security and bond with their parents. I believe these young adults will become valuable secure members of our society and most importantly members of a family built on honesty and love.

Dr. Mark P. Leondires, medical director and lead physician with Reproductive Medicine Associates of Connecticut (RMACT), is board certified in both Obstetrics and Gynecology and Reproductive Endocrinology and Infertility. He was recently selected for a second consecutive year to be part of Best Doctors in America, as chosen through a doctor peer-review process. Best Doctors in America represents the top five percent of physicians across in the U.S.

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