This week, I visited Fertility Friend for the first time in four years. I opened up a chart and plotted some details about my cycle, and then I closed it up quickly because I felt a little bit guilty and a little bit scared.
You see, J and I had planned to start trying again once BG was healthy. We had, in fact, been thinking in this direction before BG got sick too, but we obviously had to table it. We didn’t want anything to distract us from the important task of caring for our son through his disease.
Now that we are where we are–grieving mothers without a child–we find ourselves knowing with a great deal of certainty that we need to have another child. Neither of us can imagine living our lives without a little one to look after. We miss reading stories, singing songs, even worrying about what our little guy might be getting into. Our lives are far too quiet. It’s too easy to go places. Our schedules are far too bare. Our clothes are much too free of grimy hand prints and bits of kid food. The back seats of our cars may as well be caverns.
But in our minds, these things are supposed to be, and before long, when we’re ready, we’ll be working on creating the next love of our lives.
This community will understand our unusual predicament as we explore this possibility. We had one donor, and he’s still available. Between my genes and his, we had a really beautiful child. But we also had a child with a very rare disease, and while there is no known hereditary link, there is still this question about whether we ought to use our old donor or go with a new one.
On one side, there is the sentimental pull to have a child who will resemble our BG, who will maybe sound like him or have some similar mannerisms. On the other is this idea that maybe we shouldn’t go there again. Maybe there is some weird thing that happened between my DNA and the donor’s.
We have talked to our son’s oncologist about this. She is, after all, one of the leading experts on the disease he had. However, she found the question just as difficult as we do. She sees these cases of this disease, and it’s so very, very rare that she just doesn’t see them in the same family. She also studies it endlessly in the lab, and there are no inherited traits. It’s a genetic anomaly. It’s a case of really bad luck. We have asked other professionals in this field too, and their general hunch is that, no, we shouldn’t. One doctor asked, “Why would you?”
The thing is, no one would ask a straight couple whether they were going to seek a sperm or egg donor for any subsequent children. If they were going to have more children, they would simply have more children because that’s what people do. And they have reminders in their new children of the child who died.
I don’t know what the right answer is. I know I awoke from a nap today to find my wife perusing the listings at our sperm bank, and I just found myself rejecting the donor she had pulled up because I couldn’t imagine anything else.
We’ve got time to figure it out. I’m not ready yet to be pregnant, but I think in a few months’ time, I will be ready, and we are going to have to figure it out.
So tell me, friends, what would you do?
reproducing genius 
Oh wow. What a decision to make. I can totally understand why you’d want to have a new little one that resembles BG. BUT a huge part of why he was so amazing was because of his parents and another child will be like that for the same reasons! I think my gut would tell me to use another donor. I think in your shoes that’s probably what I would do. I think.
What an incredibly challenging decision.
While I completely understand wanting a child who resembles BG (and of course any child of yours will for many reasons!), if it were me, I’d choose a new donor. While it was a genetic anomaly, I could not subject myself to the (likely unnecessary) worry that it wasn’t. The “what-ifs” would be overwhelming.
That being said, it sounds like you are really struggling with the idea of a new and different donor. Maybe time will change that, or maybe your gut is saying that your original donor was the right one for your family.
In any event, I wish you luck in the decision and subsequent TTC process. You seem like such wonderful parents, so I am really glad to you that you plan to fill your nest.
What a tough decision to have to make. I can absolutely understand the desire to use the same donor, but after having such a terrible heartbreak, I don’t know if I could bring myself to use the same donor. If there is still so much that they don’t know about his leukemia, perhaps there are just things that they don’t yet know? On one hand, it’s hard to fathom that such terrible luck could strike the same family twice, but god forbid, what if it did? Oh, I just send you so much love and hope that you find a clear path to the answer that is right for your family.
I most certainly wouldn’t question you picking the same donor. Everything in life is hit or miss. Our babies choose us and BG chose you both for a reason. Maybe he knew you two would be able to write his story, express his love, and share with the world that two women can parent a boy just as amazing as one woman and one man. He chose you. And the next bb will do the same, no matter what you decide.
xoxo
I don’t think there’s a wrong answer here. It does seem incredibly rare (if it’s ever even happened at all) that there would be two children in a family struck by leukemia. My first instinct is to go with the original donor as I’m with you – the thought of seeing a bit of my first baby in the second one would be too wonderful to pass up (of course, this child would have half your DNA just like BG did, so there likely would be some resemblance no matter which donor you use). However, if it’s something that would really worry you and would take away from the parenting experience, then perhaps a new donor would be better. See? No wrong answer.
I’m so happy read that you are set on having another child. The world needs people like you to raise children. Hugs, friends.
Sadly, leukemia can strike multiple children in the same family. It doesn’t happen a lot, but it does happen. JMML, on the other hand, is so uncommon that I don’t believe it has hit more than one children in a family.
You’re right though: there is no wrong answer, and I appreciate the points you raised.
Thank you for editing my comment to remove BG’s name. I realized the error later and came back to edit. I wish you a quick, smooth journey to #2, whatever path you choose!
You don’t know me and I have never commented on your blogs before. Yet my partner and I have followed you since TTC with BG. First, we are so sorry for your loss. Thank you for sharing BG with us, and the world. It has allowed his light to shine bright on all of us. I had such a strong reaction to this and I totally think you should use the same donor. If you were straight, no one would even ask this question. The statistical chances with such a rare disease are just so completely unlikely. I can’t really capture it in words appropriately, but I think it comes down to honoring your loss, BG, and the courage to try again. I hope that makes sense, you are both so very brave.
What a tough decision.
Normally, I wouldn’t offer up my opinion on such a personal and agonizing choice, but because you asked… I think I would go with a different donor. For two reasons:
the first would be the JMML thing. I know they said there’s not a genetic link but there’s also a lot they don’t know. In my mind, I would always be scared for my future child, always watching and waiting and worrying for JMML to rear its ugly head again. To some extent, I’m sure you guys will always be doing that anyways, but would having the same donor amplify that fear? for me it would.
the second reason to choose a new donor would be because of something you alluded to in your post- that you’re hoping if you use the same donor, you will find yourself with a child who will be similar to how BG was. I know that that could be an amazing gift, but it could also be a lot put on a new child’s shoulders, even unwittingly. No matter what (as long as you carry again) BG and this new child will always share at least half a genetic link. I think choosing a new donor and removing the other half of the genetic link would allow some separation- both emotional and physical (in the genes)- between child who was and child will be. It may give child-who-will-be more freedom to be “just themselves” you know?
Like a previous poster said though, I really don’t think there’s a wrong answer here. Go with your gut. And I’m looking forward to following your new journey!
First of all, I think you and J are wonderful parents and I am so, so glad you’re planning to have another child. He or she will be so lucky to have you. Best, best wishes with all of that.
Second, I am going to go against the majority here and say that I think that if it were me I would use the same donor. You’re right that no one would tell a straight couple not to have more children or to choose another method. If it were me I would want that genetic link between my children. I would want to see BG’s features and maybe some of his personality in another child. Of course he or she would share your genetics and probably have many similarities even if you chose another donor but I know I would want that tie.
I have no idea what I’d do, and I know that – no matter what you do, it’ll have to be what’s right for you. Whether it’s using the same donor, knowing how slim the chances are, but living with that fear, or going with a new donor, in a hope of avoiding that.
Of course, now that I’ve typed this out, it seems stupid – you’re going to have that fear no matter what (at least, I would, if it were me). So if JMML really hasn’t struck two children in the same family, and I’d have that fear no matter what, I might be more likely to go with the same donor.
But the point being – it’s one of those things where there’s no good answer. Just the answer that works. ♥
We were about to start trying for our second with frozen sperm left over from the first when the sperm bank contacted us that Krabbe’s disease (a recessive autosomal genetic mutation) has been reported in a child from the same donor. We can still use the same donor (after signing a million forms stating that we did so knowing that a problem had been reported) or pick a new donor free of charge. We had pretty much decided to stick with our original donor for reasons you’ve stated when our fertility doctor stepped in and changed our minds. Yes, straight people carry on and often take chances (although I wonder if they don’t go and grab some other sperm in many cases) but who knows. As our doctor said, as ‘out’ donor users we don’t have to worry so much about keeping it in the family. The straight baggage isn’t there so he couldn’t understand why we would even entertain taking a known risk. He also echoed what another poster has already mentioned – we just don’t know enough yet to be sure that the benefit outweighs the risk – genetics is a young and rapidly growing field and thus unstable in terms of knowledge. At the end of the day you have to do what feels right for you guys. For us, picking a new donor for our second seemed the right decision but I’ve got to say it hasn’t been easy and I totally understand your feelings on one level and, of course can only imagine on another level – so not sure what I’d do in your situation. Now that we have ordered new sperm we are excited again. One thing about getting a new donor that I think will be super cool is that the aspects of your son that shine through your next one will be undeniably you and him – and your wife. As a non bio parent I am convinced that I pass on what I call qualitative DNA! Whatever you decide – so great that you’re going to try for number 2.
That is such a difficult decision. I don’t know what I would do, and I can’t even begin to suggest to you which route would be better for your family. I’m certain, though, that the thought and love you put have put into all that you do– your family, your career, your writing– will mean that this decision is also made with such thought, care and love that it won’t have a chance of being wrong.
There is absolutely no right or wrong answer like others have said. Being that it IS so rare, I think I would go with the same donor. I am very happy to hear you plan on trying again. You are both amazing parents.
What a tough decision to make, and as everyone said, there really is no right or wrong way to go about it. If it were my decision, I would want to try a different donor. I would just be too scared to take a risk, even if the risk was only in my imagination and not scientifically-proven. Any subsequent children you have will still have half your DNA and be like you in many ways and different in many others…and like BG in many ways and different in many others. But I’ve always been for shuffling the deck more. Whatever choice you make will be the right one for your family, and I wish you a smooth path to your next child.
I’m a bit of a research wonk, and I’ve done some reading about JMML. (Among other things, I wanted to make sure that my work – a cancer charity – funds JMML research. We do fund a translational researcher who’s considered the world’s preeminent JMML expert. I read a bit of her work to understand the genetic anomaly component). Anyhoo, I can see why it wouldn’t – and statistically couldn’t – strike twice in one family.
If I were in your place, I think I would stay with the same donor. This new ‘love of your life’ would likely have some beautiful similarities to BG (as well as some notable contrasts). I can see why you want to meet that little person, and I can imagine the heart swelling love when you do.
No matter what you decide regarding the donor, though, this new person will be wonderful. I am cheering my heart out for you.
What a difficult decision.
I’m sure you will find the right answer for your family when you look into your heart. There is no absolute right or wrong answer.
Although my experience in no way compares, I can share that our donor is no longer available because he has cancer. We are TTC #2 (and eventually #3) and still chose to use the same donor because it was important to us for our children to be biologically linked through the donor (as we will use both mine and my wife’s eggs). This was important to us for the very reason that might have deterred another family from using this donor; in the event we needed a related donor match (blood, organ, etc.). I don’t know how our decision would have been changed if there was a high risk of a hereditary component but since it is low risk we decided it was best for our family to continue to use this donor.
I believe I would use the same donor if I was in your situation. Although I do believe that you will see your sweet BG in the face(s) of any children you have regardless of the donor you choose.
That is so hard. My wife and I are just beginning this process of searching for the “right” donor–it’s hard enough all on its own. If it was me, I think I’d choose a different donor. I don’t think I’d ever stop worrying about something terrible happening either way, but I KNOW I’d always be terrified if we used the same donor again–rational or not. And no matter what the biological relation is, BG will be this child’s brother 100%.
Wow, T. Count me among the many others who have commented here who feel wholly unqualified and inadequate to the task of giving you advice. But you did ask us for our thoughts, so I’ll try and proffer a few.
I’m glad you and J. are thinking about when and how you will add another child to your family. From what glimpses I’ve gotten, it seems that you two are standing strong together, grieving together, relying on one another as you face this unimaginable loss. I know the death of a child is a catastrophe that many couples cannot survive intact and I’m happy to see that you two are so committed in the face of this. I’m glad that you already know and are taking tentative steps towards ttc. That takes tremendous guts and strength and courage too…and it means that you are willing to move forward and to risk and to love with your whole hearts. That is amazing. You must know what wonderful parents who are and how lucky your next child will be to have you as moms.
I’ve tried, over the last few hours since I read this, to think of what advice I would give on the donor thing and I come up empty-handed every time. I think, if I were making the decision for myself, I would choose another donor. But I can’t say for sure, since I haven’t been in your shoes. And that is only what I _think_ I would choose and would be right for me, not what is what globally or what is right for you. There is no right answer so I’ll just say that as you stew and ruminate and process…eventually the right answer for you and for J. will become clear, even if the way forward is murky and dark for now.
I can see both sides of wanting to use the same donor and wanting/needing a new one. On one hand choosing the same donor gives you a greater connection to BG. You will have a child with more similarities to BG and therefore a very visual reminder of him. In a way choosing the same donor also honors BG and that combination of genes that helped create such a beautiful and charismatic individual. Choosing the same donor though may also set the next child up to have projected on to them your unfulfilled hopes and dreams for BG.
Choosing a new donor though may give both of you a greater sense of security believing that the chance of JMML rearing its ugly head again is nil. Another donor may give you the sense that you are protecting yourselves from experiencing the same pain and loss as you experienced with BG. In reality, a new donor may pose the same type of health risks as your donor you used with BG. There are no guarantees that a new donor will not pass on a genetic health risk. I can also see wanting a new donor to give BG an honored space in your family allowing him to be the only one from that combination of genes.
If it were me, I think I would use the same donor… But if my partner just couldn’t bring herself to do the same I would have to find a way to be okay with it and choose a new one.
Perhaps with a little more time you both can gain clarity on what is you both want and why. Whatever your decision is it will be right for you both, your family, and BG.
I was going to say the very thing you did, that no straight couple would even have this decision to make. I mean we as a lesbian couples have so much choice, 2 uterus’ and an endless choice of sperm.
If what you say is true and it was just bad luck I would use the same donor. It would just feel right to me. I echo a pp who said that a new donor could bring it’s own uncertainties, and really BG was such a wonderful amazing child, the question ‘why would you?’ goes the other way, why would you not want to have that again with the same donor.
You are so very brave to be thinking about this already, and when you are ready, we are all here to join in with the journey.
Much love xxx
I truly have no idea what I’d do. I agree with what others have said so well – that there really is no “wrong” here. Your instincts led you to parent so beautifully before, and I have no doubt that those instincts will lead you in the right direction. xoxo.
You two continue to amaze me. Echoing Tbean, I am so lightened that you are holding strong to one another. I would keep the donor. Life is unpredictable. And I think BG would agree. (i hope)
I wish you so much love and luck on your second TTC journey. I really have no idea what I would do if I was in your position. I think I would opt for a different donor, just in case. Because our boys have different donors (and the same biological mother), I’m often drawn to seeing differences/similarities in straight families with more than one child. From what I’ve seen, children can be very, very different (both looking and in personality) even if they have the same mother and father. Likewise, half siblings can be very similar. For this reason, I think I would use a different donor. In the end, your second child will be beautiful, smart and intensely loved by the two of you, no matter what his/her genes are. I have no doubt.
You know, this is something I had to think about for a really long time. I am married to a man and we have two babies but if we were in your situation where one of our children was affected with JMML, frankly, I wouldn’t want to have another child with my husband and I’d go straight for adoption or an egg donor. The fear of my next child developing the same disease as his/her sibling would just be TOO MUCH FOR ME (though that fear would be with me regardless) and for my husband as well. As much as I enjoy looking at my children and seeing my husband and me in them both, I couldn’t bring myself to taking that genetic risk. That is what I would do…that’s what would work best for my family. I think that you guys are remarkable and your son couldn’t have possibly had better parents and I know as well as everyone that reads this blog that regardless of your next child’s genetics, s/he will be just as loved and fortunate and we will all be here to cheer you on and love on you!
Loving you…Praying for you…
~Gia
I think, along with almost everyone who has commented that there is not a wrong choice per se. Staticially it feels like to me you have been “struck by lightning” and I think if I were to make this decision I would use the same donor…. I have been thinking of you guys so much, and I am happy to hear these thoughts from you. I will be with you on this journey. And I agree that your second child is going to be so loved and you will see BG in him or her since the parents will be the same. I wish you so much peace with this decision.
Oh, friends. This is such a hard decision. Fern and I were talking about it last night and we just do no know what we would do. We can’t know. My instinct says to switch donors to be on the safe side, but there is just no way I can understand the value to you of having the same donor and seeing little pieces of BG in your second child’s face. I can’t imagine what it would be like to give up that chance. I think you’re going to get some clarity on which donor to use in the coming months. You’ll find the right answer.
I’m glad you’re thinking about another child and I’m glad you’re talking about it. I can’t imagine going from the constant rush of parenthood to so much free time. I think it will be good for your healing to have the work of parenthood again.
All my love.
Wow. You are faced with a huge decision, which ultimately, is going to be completely up to you and J. If it were me, I would also be torn. Although the genetic connection of the disease is rare, it is also a gamble that you don’t want to face again. i think the biggest issue for me would be if I wanted to have another child who would reassemble BG. I think it would be wonderful and completely painful at the same moment. Whatever you decide, I know you will enter the next stage with the love and confidence in which you live and parent. Much love T & J. You are always in my thoughts.
I recently found myself wondering if the two of you lovely ladies would be expanding your family and I’m overjoyed to read that you will be. I’ll try to make my answer short and sweet, but I have a feeling it will be long and convoluted. I apologize ahead of time.
Having a set of triplets which includes a set of indentical twins which in turn includes a medically fragile child gives me an interesting perspective. Linus’s complex congenital heart defects were ruled a “spontaneous mutation” by the cardiology geniuses that have come to know and love him. I know for a fact that my DNA and the donor’s can make beautiful, amazing, loving children. They also made a child who has suffered greatly through 9 surgeries, countless procedures, hospitalizations, appointments, and will continue to do so for the rest of his life.
After transferring 2 embryos into my lovely wife, we had 3 embryos good enough to freeze and to possibly to expand our family with down the road. Now that we have 3 beautiful sons and our family is complete, we have no use for those snowbabies. I had always wanted to adopt them out to other couples like ourselves, desperate to have children. After Linus was diagnosed, that changed. I couldn’t imagine setting another family up for what we’ve gone through. The chances of any of those frozen siblings having heart issues is very slim, ridiculously slim, but I just couldn’t do it. What if?
All of that being said, would I do it all over again? For our family, I mean, if it wasn’t complete? Absolutely. My eggs, our donor, my wife’s womb. I can’t imagine it any other way. We made amazing children, the three of us. I love seeing how different and how alike they all are. It’s crazy at how much more similar Dexter and Linus are being that they are fraternal. One would think the identical set would have more in common, but it just isn’t so. Sure they have matching cowlicks, an unwavering love of Signing Time and a current obsession with horses, but Linus and Dexter are carefree and loud and rough where Simon in reserved and quiet and independent.
Regardless of whether you choose to have the same genetic make up or not for your next child, I know you will do the same comparing and contrasting that every parent does as they marvel their children’s greatness. Basically, what I mean to say is I completely understand your what if’s and your deep seeded fears about the tiniest remote possibility of lightening striking twice. I also get the sentimental feelings you have for your donor and the proven remarkable outcome of your genetic mix. I say if you have the desire to stick with your current donor, then do it and it will be glorious.
It warms my heart to read this…that you are in the beginning process of growing your family. You are wonderful mommies, and any child in your life is lucky to have you. As far as the way to go about this, it is a very tough question, with no right or wrong answer. Just as BG was meant to be your precious and wonderful child, so will any other child that comes into your life, regardless of how. You will love them, and they will be yours and you theirs no matter what their DNA. I have a 7 year old son and just “knew” the donor we chose was the right one, the “only” one (from browsing through the sperm banks countless photos). After having my son, and falling in love, and then trying for # 2, month after month, year after year, I ran out of this “prized sperm”, and he was “retired”. Painstakingly, I had to choose another (and did). With trepidation, I tried again, and failed again. I began imagining the new baby with similar, and different traits. I grew hopeful, excited. It did not matter after a point what the DNA was, I realized I just wanted another baby, and if someone had handed me any baby during the deep, dark, depressing TTC trenches of those days, I would have gladly accepted (casting my own eggs aside as well). I realized that the DNA did not really matter. The “full” sibling thing did not really matter. BG will always live on in your hearts, and souls. He will always be a part of your family. He was a perfect little boy, and your next child/ren will also be perfect. Sorry to be long winded, I guess what I am trying to say is that I think whatever you decide will be right, the baby that comes to you will be the one who is meant to be in your family. Life has no guarantees, it truly sucks at times (that we can all attest to). Do what your gut and your heart tells you. I was lucky to finally have twin girls 20 motnhs ago (with a long story to tell some other time)….They are mine, so loved, so beautiful and perfect for us, our family. It all worked out. I know it will all work out for you and J too. I still believe in miracles. BG having been here is proof of that. And now I am crying!
Not the same, but we faced a sort of similar decision when conceiving our second child. In the time after the birth of our first child, we had discovered that I carry a BRCA2 gene mutation that causes a increased risk of breast cancer. Like an 80% lifetime risk of breast cancer, plus 40% chance of ovarian and an increased risk for various other cancers. My children have a 50% chance of inheriting the same mutations.
When we started trying to conceive a second child, our first move was to try IVF with my wife’s eggs, with me carrying the baby. It wasn’t the only reason we did that, but it played a role. However, after 2 disastrous rounds of IVF – one with her eggs, one with mine – we ended up back at square 1, doing IUIs with a new donor and my uterus/eggs. It was a long and difficult and expensive (financially and otherwise) journey. Now we have our 2, presumably bealthy, children, who are half-siblings genetically. It’s fine, it’s just our family; of course, we don’t have the loss of one to deal with. We won’t know for a long time if I passed on my bad luck, but every time you roll the genetic dice, you could come up with bad luck. 😦
I wish you luck on your journey.
I would go with another donor, but not so much because of JMML. I would do it to lesson the temptation to always be looking for BG in the new child. Even if you use the same donor, there is no guarantee that the two children will be at all alike– our B/G twins couldn’t be more different. With a different donor, I think it would be easier (at least for me) to let the new child be completely his (or her) own person. Plus, you two will be reflected so much more in this child than the donor!
Today I was out in the sunshine and seeing spring everywhere. Spring is such a beautiful time of new beginnings and I kept thinking about both of you and BG. What a hard decision.
I have been reading and here with you from TTC and then parenting. You have such a very strong intuition for what is right for you and best for your family. In caring for BG that skill you have shown through. I feel certain that your heart will settle and the answer will come, it just might take some time.
No matter what you choose, you will love this child. So, for my 2-cents, I would go with a new donor (who was willing to be known because in one of your postings, you wrote about trying to find BG’s donor and failing.) I guess I would practice a type of regret-management in going forward – if something were to happen then at least I wouldn’t be blaming myself for using the same donor. It would be lightning striking twice, not your choice.
It’s not that we weren’t able to find BG’s donor; it’s that he still wasn’t willing to be contacted, which is ultimately fine and what we wanted to begin with. As it turns out, using an unrelated bone marrow donor yielded a much closer match for BG’s bone marrow than either biological parent ever could have been (we can only be a half match to our children, and that isn’t always guaranteed).