Tuesday, February 22, 2005

Grieving the genetic link

I just watched George Cukor's 1944 gothic masterpiece Gaslight, starring the luminous Ingrid Bergman. She won that year's Best Actress Oscar for her taut, unnerving performance as a Victorian woman being driven slowly mad by...well, that would be telling.

A couple of months ago, we watched SciFi Channel's Earthsea, starring Bergman's daughter Isabella Rossellini. Regrettably -- because Ursula K. Le Guin's novel A Wizard of Earthsea and its sequels are so outstanding -- Rossellini's performance was the only memorable one in the miniseries. Perhaps that's why I thought of her as I watched her mother on screen. Film is a time-flummoxing media. Before my eyes was a mother, younger by years than the daughter I remembered from another film. I was struck by the echoes of the one in the other. Their voices, their eyes, that distinctive shape to the mouth....

It hit me hard, a hammer blow: I will never see in my donor egg child those echoes of myself. The genetic link is lost.

Grief, the experts tell us, comes from loss. Any sort of loss, though death is the most commonly discussed type. When I think of the grief I feel at not being able to have a genetic child, I also feel guilt. As if I should be so happy and grateful to have a child by any means, that I have no right to these feelings. As if, by feeling this grief, I label my donor egg baby as "not good enough." And so I thrust the grief away from me. I try not to own it.

Yet it is still here, like a piece of furniture I keep tripping over in this house of infertility. And, all experts in the field agree: A woman must "work through" her grief at the lost genetic link before she is ready to be a donor egg mother.

Madeline Feingold, a clinical psychologist with a specialty in reproductive medicine, offers this: "...couples must grieve so that the loss of their genetic child does not cast a shadow that negatively interferes with parenting and loving the child that will be their own" (Disclosing Origins: Children Born through Third Party Reproduction).

Oh, my God. I'm already a bad mother. One look at Ingrid Bergman and all my grief work is unraveled. I am crushed. Amputated. Something vital is gone, and can never be regained. But what is it? I can get neither my hands nor my head around it. I have to ask myself: What have I lost? Who died?

Many proponents of donor egg insist there is no loss, or none that matters. I will have the experience of pregnancy, that some call the "gestational link." I will give birth. I will breastfeed at 2 a.m. and hover anxiously over the crib while my baby sleeps, making sure that little chest rises and falls. I will churn through rolls and rolls of film, create silly Web sites devoted to my offspring, and someday join the homework and soccer-practice grind. I will be the only woman my little one knows as "Mom." I will love my child like a lioness, fiercely and without reserve. If I consider only the act and experience of motherhood, then I will have lost nothing by being a donor egg mother. Thank God.

Yet, for me, there is a loss. I have lost the ability to pass on my genes, and to mingle them equally with my husband's in the creation of our child. My body has failed to do its full duty in this process of conception. Because of that, what should be emotionally simple, even joyful, becomes complex and fraught with doubts and fears. I would not be human if I didn't wonder, "Will I bond with this child as I should? Will my child resent me for my choice?" And a whole host of other worries that I can come up with in the wee hours of the night. These are not the concerns of a mother who conceives with her own eggs, and the loss of that simplicity is grievous.

Recently, I found the article Infertility and Aftershocks, by Patricia Irwin Johnston. In it, she writes beautifully and sensitively of the impact of unresolved grief for the lost genetic link on the lives of adoptive parents and children. I hope Ms. Johnston would forgive me for quoting from her article and substituting "egg donation" for "adoption," because I believe the issues are the same:

"It's like this. Egg donation makes us parents, but it doesn't make us fertile. Much as we might wish differently, egg donation, despite giving us parenthood, cannot change the facts of those several other losses associated with infertility -- the loss of control over many intimate and practical aspects of our lives; the loss of genetic connection and immortality; the loss of the opportunity to create a new person who is the genetic and symbolic blend of love we share with our life's partner. . . . Egg donation can't give us these things that infertility took from us."

When I first realized what diminished ovarian reserve meant, there was black terror in knowing that when I die, I am extinct on this earth. Genetically, I am a dead branch. I will not continue. That reality scared me, deep in the gut. I am far from superb as a genetic specimen, and in my rational moments I know that I will leave my legacy in other, more important ways. But the loss is still felt.

It helped me to realize that it's a two-way street: We grieve that we will not pass on the traits we like about ourselves or our birth families, but we may feel a (guilty) sort of relief that we can avoid bequests such as alcoholism, depression, or--believe me, I've pondered this one--a genetic predisposition for early menopause. And "traits" are not all passed on genetically. Values, habits, mannerisms . . . all these come with family, and will be available for good or ill to my child.

Another element of the genetic loss is familial. I have a nephew who is the spitting image of his grandfather. That will never be, for my baby -- unless he looks like my husband's dad. My family is proudly Irish and has a 200-year history in one Southern city. It saddens me to think of taking my child there, or to Ireland itself, and having those places mean nothing to him. I ache at the thought that my child, no matter how much loved and welcomed by me and all my family, will be different than her cousins. I don't want that difference for her. I want her to merge into our family like a raindrop into a river and never worry or wonder about where she "comes from." That is simply not to be for my child. I feel as if I should take her in my arms right now and say, "I'm sorry. I'm so sorry I could not give that to you."

It helps to realize that grieving a lost genetic link is not unique to donor egg mothers. Adoptive parents and children have struggled and made their peace with it for years. I have a friend whose husband was adopted, and he has none of the issues I fear will afflict my child. He looks on his place in his family as "adopted into the clan" in the Scottish sense: "...the chief of a clan would 'ingather' any stranger, of whatever family, who possessed suitable skills, maintained his allegiance and, if required, adopted the clan surname." Now, that's the right idea.

A last and somewhat ignoble loss is this one: It just wasn't supposed to happen this way. If in fact Change = Loss = Grief, then I have sustained a heavy loss: The idea of my life as it was supposed to be; as I expected it, dreamed of it, worked toward it. The hard part was supposed to be finding someone to be a father to my children; I never imagined that I would have to go to such unusual measures to have them in the first place. There's a not-very-grown-up person inside me who wants to be just like everybody else, with a mate and a cottage in the suburbs and 2.5 adorable children who may someday say to me after a tussle over curfew, "I hate you!" but who will never say, "You can't tell me what to do. You're not my mother." The woman who strove for that life will never achieve her goal, and I feel badly for her, even as I have to tell her, "Oh, grow up."

It occurs to me to measure my progress against the famed Five Stages of Grief. Am I still in denial, refusing to acknowlege my loss? No, I don't think so. How about anger; am I still asking "Why me!" or wailing "This isn't fair!" I must plead guilty on that one. I will probably be angry about my reproductive fate until love for my donor egg baby makes that feeling meaningless. Am I still striking bargains with God, promising to cure world hunger if he will only give me a baby? No. My miscarriages cured me of that one. If God were going to come through with a genetic child, surely it would have been one of those. My personal favorite -- depression, suffered while we mourn not just the loss but our dreams, hopes and plans -- still dogs me every day. Without it, I don't think I'd be writing this.

And so we come to acceptance, the state of finding comfort and healing from grief, and the ability to reframe the situation to see its positive aspects. Here I would have to say, "I'm getting there." The truth is, I will cycle through these stages of grief many times as my donor egg journey continues.

The one thing I cling to, that I read over and over again on one support board that I visit, is this: Once you have your baby, all the doubts and fears go away. Amen, wise sisters.


Anonymous said...

"There's a not-very-grown-up person inside me who wants to be just like everybody else..."

For me, you've hit the nail on the head exactly. Why does it have to be so hard for some of us, when it's so easy for others? I try to remind myself that there are other things that come easily for me and are not so easy for others. It helps - a little.

Anonymous said...

Oh My Gosh!! You are in my head!! I feel the same way. When I die, I am gone. I was not meant to continue, to live on. I end. Wow. I looked at my nephew the other day and saw my father. It hurt b/c I will never look at my child, (If I am so lucky to be successful that is,) and see my parents, myself, my siblings. But we will go on in what matters, our values, our morals, our caring and kindness. All the characteristics that we teach our children that really matter. That is what I hold on to. Good luck to you, and I pray that we are all successful in this journey and find peace and happiness.

Anonymous said...

Yes, I "forgive you" for substituting "egg donation" for "adoption" in my Aftershocks article. Well said!

Pat Johnston

Anonymous said...

I have just found out that I will not be able to have children with my own eggs. Thanks for the thoughtful words that express this loss so precisely. They are a blessing as I try to find my own words to make sense of the loss and to begin to understand the far reaching impact on me, my husband, and our families as we move forward.

Anonymous said...

Your writing was extremely accurate in expressing many of the feelings of our generation of "egg donor moms," and what I personally went through in 2003 when I heard those aweful words "dimminshed ovarian capacity." That said, I want to offer you some words of hope, and maybe help, in resolving these feelings by focusing on what you do and will see in your gestational child :-). Since having my son I can see parts of my husband and his family, some in looks, alot in behavior and intelligence, and I am choosing to focus on those aspects rather than dwell on the fact that he doesn't resemble me or my family. I also often think about the fact that some of the most important aspects of my child will come from me in a different form, that of teaching him as his mother about character, values and his whole belief system. These aspects also have longevity long after I will have left this earth and in many cases will have a much greater effect on the legacy of love I will have left with him than any genetic link ever could have had. Lastly, whenever I many wander into thinking that life isn't fair I thank God that medical breakthoughs have provided me an opportunity to have a child that I was able to carry and actually give birth to. The alternative would have been much worse for me.

Beth Gray said...

Anonymous, this is a great reminder to all of us. In any situation, focus on the good parts, not the bad ones. And my girls are good, good, good!

Momasita said...

Thank-you for posting this. I have been really struggling with this. I am doing DEIVF in April and have recently started BCP in preparation. When AF showed up this last time, I cried for all of the babies that I never had nor will ever have with my own eggs.

Anonymous said...

I've just lost my third baby after my 6th IVF, my first being a stillborn daughter at 37 weeks and my second and third pregnancies ended in early miscarriage, all in the space of less than 21 months. I'm almost 41 and your post has struck such a nerve in me. I'm grieving for my lost babies, but I'm also grieving for the fact that any future children I have will have no genetic link to me. My husband dragged his heels in coming with me for IVF, it ends up it was MF, and yet its me being penalised as he will have that link to our child that I no longer will be able to have, and I'm jealous of that fact. I'd been on at him since I was 32 to go for treatment,and I'm angry with him for wasting so much valuable time. Its early days but we're registering with a clinic for donor eggs, but I'm scared I won't be able to bond like I did with my little girl, as I could recognise little features in her, such as my fingers or my dads nose. It hurts that my pregnancies all ended in failure and I don't want to risk my eggs being dodgy and having a poorly baby as I don't want any child of mine to suffer, and using the eggs of a younger donor would prevent this, and I'm so so grateful that there are wonderful ladies who will donate, but it still doesn't take away the fear that I won't bond.

Anonymous said...

Today I myself, was hit hard and it came out of nowhere...my hammer blow happened as wondered the baby section in a dept store choosing outfits for our soon to arrive ED conceived baby boy...there it was, the cutest blue & white stripe little onesie with the slogan "50% mum + 50% dad = 100% me!" I went to reach for it and read the slogan at the same time, I stepped away from it as I felt the hammer blow.

Now, I've spent the evening shedding tears & feeling really sorry for myself.

Yes, I feel guilt for feeling like this. Yes, I feel I should be grateful that I'm even getting a chance to be pregnant and a mum and the fact is I am so very, very grateful. But right now I find myself grieving for the life that was supposed to be. The simplicity you speak of - of a pregnancy conceived the "way we all think it was going to be for us". I'm not feeling very grown up and I want back what infertility robbed me of...all those things you said.

Thank you for capturing so perfectly the feelings I am struggling with today. I do believe that once my little boy is here in my arms...I will feel silly for shedding the tears I have today. I can't wait to feel silly!

Anonymous, I am also at times angry at my husband for wasting valuable time in agreeing to seek out treatment with me when I raised it at 30, then 33 and then 35. I'm angry at myself for going along with his inaction, which I now know made matters worse for me - for at 37 I was diagnosed with High FSH/POF. Sometimes the only consolation is knowing I am not alone in my journey or feelings. There's others out there too. Thanks for sharing.

Beth Gray said...
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Anonymous said...

Bee, I just stumbled on to your blog. Thank you so very much for your words. My husband and I are about to have the ED talk with my doc in a few hours (though my husband is unrealistically optimistic that the doc will suggest another round of IVF). It is so nice to know someone else felt almost exactly like I do now. It makes me want to beat myself up a little less for what I’ve been considering my pure vanity. I now feel a little less guilty for wanting to see myself (mixed with my beautiful husband) in my child. And, especially reading your most recent posts, I feel assured that these feelings will vanish as soon as I hold my baby, no matter whose DNA he or she carries. Oh, I could go on, but I would simply be restating so many of the things you have so eloquently written here. Thank you for taking the time to share. -MT

MJ said...

I don't know if this link is still active. If so, anonymous, did the pain go away? We just found out, after 12 IVFs!, that I cannot conceive with my own eggs.
It is great that donor eggs are available but the loss is so huge.
I have never suffered from depression before but now I can cry at the drop of a hat. I am afraid to go ahead with donor eggs in case I don't love the child.
Any advice???

Anonymous said...

The loss wouldn't hurt so much if I didn't have to tell one day. The counselors told me that I have to start with the little story about how my husband and I got the egg from a "nice lady." That it's a lie not disclose even though my child will never meet this woman and I'm the one that will be carrying the child and birthing it into the world. But it's true; a lie is a lie.

Anonymous said...

Amazing! That someone else felt exactly how I feel right now :-(

Anonymous said...

Thank you so much for writing this. Sums up how I feel so perfectly. I have twin boys through egg donation...after a long 'battle' with infertility I have the children I was meant to have. I still struggle a little with loss but laugh sometimes that perhaps my genes aren't all they are cracked up to be - an alcoholic Father, sister and addict brother - I'm glad not to pass that on.

Anonymous said...

Thank you so much for expressing exactly how I am feeling. I am 16 weeks now with a donor egg and struggling a bit, maybe a lot! I have been extremely sick and perhaps that has something to do with it, but there is such a sense of loss not having your own child and seeing yourself in it. I too saw the "50% Dad, 50% Mum = 100% me" shirt and burst into tears. This weekend we had friends over with their gorgeous 8 month old with huge blue eyes, and I knew that I would never see my own huge blue eyes in my child and it hurt. Everyone says it will be your baby when it comes out, you will bond with it. I am just praying that I do. I know the miracle that I am a part of, being able to do this both medically and financially, but there is still sadness there, no matter how hard you try to remember the good and positive things. And no one knows how you can feel this way unless you have been there. Thank you for this post and for this blog, it makes me feel not so alone.

Anonymous said...

Everyone tells me I am so "fortunate" that egg donation is an option. I know that's true, but there's nothing fortunate about infertility. Thank you so much for this article. I really needed someone to understand.

Anonymous said...

I am 7 weeks pregnant with a donor
egg. Life really does suck sometimes. In 2008 I lost my dad. A year later I miscarried at six weeks after IVF. A year after that we had to terminate our 2nd IVF pregnancy at 14 weeks due to problems. 5 months later my mum died. 4 months after that I find out I have a chromosomal abnormality explaining the fact that some of the bones in my body are not formed correctly,(however you would never notice with me because I only have very mild symptoms). If these genes were passed onto a girl there would be no telling how severe the abnormalities would be. If the genes were passed onto a boy it would have learning difficulties and be infertile. I was 39 when I found out this terrific news. Given the fact that there was a 50% chance of my passing on the defected genes to my offspring, my husband and I decided to opt for egg donation. At this stage, 7 weeks in, I feel no connection with the baby inside me. I just feel like a vessel. I am hoping this will change. I look at photographs of my parents and I know that if they were here they would support me 110% But yes, I am so sad that I won't see their traits in my child. I have so many sentimental things that belonged to my parents - a wooden chopping board that belonged to my grandma, tools that I grew up with in my dad's tool shed. I've looked forward to passing these and many other precious things onto to my own children one day, and more importantly the memories that go with them. But technically, my parents won't be my child's grandparents so passing on my precious memories just won't be the same somehow and it's a conversation that I may even try to avoid. This really hurts. And then there's the issue of to tell or not to tell. I cannot live a lie so I think it's only fair to tell - but at what cost? If one day the child inside of me chooses to look up it's biological mother, I will totally understand. However, I am scared that it will meet her, like her and form a close relationship with her. I will feel like second best and after all I've been though I don't deserve to feel like that! I want my baby to be ok and am doing all I can to help this pregnancy to work, but I have to admit I am worried. On a positive note, I just think that to be a donor and to be a donor recipient is a really brave thing to do, and for some reason the path that I have trodden thus far has led me to this point. The child inside me is for some reason meant to be there.

Anonymous said...

What you are saying about becoming "extinct from the planet" is actually not true as long as you have any remote relatives who have had kids. For instance, let's say you are an only child and you have two kids. Those two kids have half your genes. On the other hand, let's say you have three siblings who each have three kids while you have none. In the latter situation, more of your genes are actually passed on despite the fact that you had no kids yourself (your nieces and nephews share 1/4 of your genes,9/4>3/3). If you keep extrapolating this idea, among other things, it suggests that people of a certain race (who share more of their genes) should go out of their way trying to have more kids for the sake of perpetuating their genes. This is actually a strange form of racism! Food for thought, that's all.

Anonymous said...

Typo above, I meant to say that 9/4>2/2.

Anonymous said...

You grieve over losing a genetic link etc, but what about the baby you create when using donor sperm or eggs? Did It ever cross your mind that they perhaps might feel a deep loss and grieve over the loss of their genetic family? That the feelings you had about losing the genetic link may be a thousand times worse for the child? That they might ( and likely will) be tormented for the rest of their life knowing that they were severed from their genetic family intentionally by you so they could play the roll of your offspring? Does that matter to you at all or is it all about you?

Beth Gray said...

Anonymous, I've debated whether to leave your post on this blog or not. Normally I delete posts like yours when the poster doesn't use his or her own name and email. However, you write as if YOU might be a child of gamete donation, so I've decided to leave your post so that parents considering gamete donation can be exposed to a "worst case" scenario in terms of the reaction they might receive from their children.

To answer your question: "Does that matter to you at all or is it all about you?" I doubt you've read the whole blog or you would know that YES, the emotional experience of my children matters intensely to me. That was the central fear that drove me to spend an agonizing year and a half trying to have babies with my own eggs, and suffering two miscarriages that I grieve to this day. Yes, the choice to have babies in this non-traditional way was, to some extent, a selfish one. I could have simply accepted that my ovaries had died off earlier than most and I wasn't "meant" to be a mother. If I believed (then or now) that my children would be "tormented for the rest of their life" by my choice, I would not have done it. I read extensively of the experience of adopted children, to inform my choice.

I thought then, and time has confirmed, that my children would suffer some stress, some anger, some sadness when they came to understand their origins. But is it better FOR THEM that they NEVER EXIST AT ALL? I don't think so. And neither to THEY.

My daughters, ages 10 and almost 8 now, know of their donor egg mother and have seen her picture. They ask questions sometimes, not that often. My younger daughter wanted to know why her donor egg mother "didn't want me," and we had a long, tricky conversation about the fact that an egg isn't an embryo, and that our donor wanted to help ME to be a mother. She herself was already a mother, and didn't want to get pregnant that month. My daughter asked if she could meet her genetic mother, and I said I would try to arrange that when she is 18, per the terms of our donation. At the end of the conversation, my daughter said, "Mom, I'm glad I came to be your baby." My older daughter has much more existential angst, but it is around why she was born disabled, not why she was created from another woman's egg. She doesn't seem to focus on that aspect, and no wonder.

My daughters are not "playing the role of my offspring." They ARE my offspring! The babies I was meant to have. They know that. And now that I know them as human beings, I believe they will forgive me any pain I've caused them by my choice, because that's what loving families do. Time will tell. Even if they reject me in future--and I don't think they will--I'll stand as their mother. I will love them to the end of my days.

Anonymous, you are either a person who feels free to morally judge others' reproductive choices when you, yourself, have no experience of the situation--I've run into a few of those since I started this blog. Or, you are a child of gamete donation who is in pain. You are reaching for your genetic connection because your connection to your donor-recipient parent is not what you need it to be. If that is the case, I am so sorry. I wish I could make it better.

Jackie B. said...

I'm know this is an old blog post, but I'm dealing with this now. My 3rd IVF was converted to IUI and this is the last time we'll be using my eggs. It has hit me so hard and I've been crying nonstop. I'm so glad to not be alone in my feelings.

Anonymous said...

When we accidentally found out our 35 year old son donated, we felt and still feel a terrible sense of loss for our biological grandchildren who are out there, and who we may never meet or watch grow up.

We also feel so disrespected and betrayed that our child took all of our genetic gifts and tossed his life-giving seed to the wind per- say, to help a women have a child, without understanding the grief and disappointment we still feel after 10 years now of not knowing our grandchildren and not being present to them. We worry about them, think about them, and hope our own are well and happy!

Lozmobrownie said...

I love my little girl with all the love any mother can give. My egg donor is a close friend and I am now struggling with a different aspect of our collective circumstance....what happens if my daughter looks like my egg donor who I see regularly? Maybe they will share that Bergmann/Rosellini likeness. Perhaps she will feel closer to that (quite lovely) family at some stage in her life. Will she feel like my friend's sons are her brothers? How will "get togethers" in the future feel? It's all very manageable now as my daughter is 16 months old but what about when she's 3, or 6 or 15?? I love my friends and my home town dearly but I'm considering moving away to reduce the impact that this whole awkward and unusual dynamic might have on my daughter's (and friend's family's) wellbeing.

Has anyone had this experience with older children?

Lozmobrownie said...
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Lozmobrownie said...
This comment has been removed by the author.
Lozmobrownie said...

I have found your blog to be the most supportive and informative thing I have in my own struggle with egg donation and it's implications for my daughter. Thank you for your candor and your selfless sharing. It has been an enormous comfort to me as I prepare myself to have (hopefully) my daughter's sibling transfered tomorrow.

Thank you from the bottom of my little confused heart.

Anonymous said...

I'm standing here reading this while looking at my absolutely perfect and gorgeous egg donor daughter. She is 11 weeks old today. She looks exactly like my husband,and just about nothing like our egg donor. Since my husband and I share some physical traits, she shares some of my physical traits, but I know it's not from my genes. I love her like crazy, she is my daughter, but sometimes I worry. We met and are friendly with her donor, and we intend to have her be a part of our child's life, even as a distant "Aunt" who she knows about and knows is the person who helped us have her. Our donor is thrilled to play this role, as the other four children she helped create have nothing to do with her. And we wanted this for our daughter, so she would never have to wonder where her genes come from, or if she looks like the woman who donated her egg, etc
It will never be a shocking or strange surprise to her, it will always be a part of her story. This is all as I want it, but I am still sad that I couldn't have my own genetic child. And I worry that she might grow up and be absolutely nothing like me, but be more like my husband and the donor, who are both extroverted and hyper, where I am more quiet and internal. I realize that none of this matters, I could have easily had an extroverted child that was from my own genetic material. And if adopted children can bond with their parents, how much more could a child that I grew and bore with my own body bond with me. But I keep being afraid that she will sense somehow that I'm not really her mother. But of course I'm her mother! Who the heck else is her mother? I really want to get over this, because this is not a good feeling to have, not for her or for me. And now she has woken up and is smiling at me and and grabbing my finger. She loves me, and I love her. And that needs to be enough.