deciding who should carry in a case of one disabled mom

jaebirdistheword

I'm both disabled and queer, newly married to my partner of six years. I have a chronic pain condition secondary to an atypical course of endometriosis. My wife and I feel strongly about having children that are genetically our own, although we would never totally rule out adoption. We have spoken about using a sperm donor, but given the fact that I am likely to have a harder time conceiving because of my illness, we are concerned about the possible expenses. Even if I can conceive, there is still the issue of the ten or so medications I take each day, many of which have been associated with miscarriage, premature birth and stillbirth. I could stop taking these medications. None of them us keeping me alive. But they do do an awful lot to improve my life. We don't know what the repercussions will be to my body if I stop taking them, or if I discontinue my IUD, which I am using therapeutically, in order to conceive.

Now, given that my wife is fertile, has a cycle like clockwork, and is willing to carry, why don't we just do that? We might. But I have always dreamed of being pregnant, of carrying the child of the person I love. My wife is willing, but she sees it as more of a hassle than anything else. I want it so bad it makes me cry. I am willing to go through the pain to feel the baby kicking. I am willing to deal with morning sickness on top of my usual nausea. I want to carry our child. Gender comes into it a bit, for sure. We are not totally gender conforming, either of us, but it would be pretty interesting trying to find maternity clothes for my butch wife. Mostly though, I worry that I won't be able to take care of her during her pregnancy. I can't drive because of the meds. I can't run out and get her pickles and ice cream. I can't take her to her appointments or tp the hospital, although I can come and be her advocate.

I guess the question that this long ramble is getting to is, is my desire to carry our child enough of a reason to possibly jeopardize my health and the baby's health? Especially when we have another parent who could do it with a much smaller likelihood of complications?

I think if I were able to give my genetic material for conception, I might feel silently about needing to carry.

I understand that being a parent means putting your child first. Does that mean, paradoxically, that I should give up on my dream of carrying a baby? Many of the people I talk to seem to think this is a no brainer, but I preserved my fertility through years of pain so I could carry our child and to me it doesn't feel so clear.

healz413

Welcome and thanks for joining us.

It doesn't seem like a no brainer to me. You have a lot of factors to weigh in making your decisions and they are all valid.

Are you in the U.S.? Canada? Elsewhere? I'm just trying to get a sense of what the particularl health care funding situation might be. Also, do you or your partner have insurance? Do you know if it covers infertility?

I obviously can't tell you which of the factors you mentioned should rule the day. But in supporting you in thinking and talking through them, I have a few comments and questions.

First, you mentioned endo and preserving your fertility. I know endo can affect people in many different ways but do you happen to know if your Fallopian tubes are clear or are you looking at goin straight to IVF? (I had to have both tubes removed due to endo)

Second, you mentioned the importance of both genetics and carrying and obviously how those balances out affects what the best decisions for your partner and you are. However, is "partner IVF" or "reciprocal IVF" something you've considered where your partner would carry a pregnancy created with an embryo from your eggs? This obviously wouldn't address your concerns about the ways in which you've envisioned supporting your partner during a pregnancy, but trust me as the partner of a pregnant person when I say that there are lots of ways (including non physical ways) to support your partner and I trust that you and your partner could figure out how to make pregnancy work in your relationship.

Third, if your partner were to carry, she would be part of a growing group of genderqueer, masculine, and trans gender people. @doodah1013 on this board is currently pregnant and is trans and boi identified. I'm from Toronto and several of the member of our community are trans men who have been pregnant. Feel free to Private message me if you want to talk about this or what to connect your partner to resources.

4. Have you talked to an RE or other doctor about this? The medical profession is often quite ableist and not very queer positive/knowledgeable. They often don't understand how gender might factor into these things or why folks wouldn't follow the advice that looks the best on paper to an outsider. So f you're not already working with someone, I wish you well in finding a queer positive and disability rights oriented doctor as I think this will play a major role in your happiness with the process regardless of what you decide. If where you live allows you access to multiple doctors/REs, I encourage you and your partner to dedicating some time to meeting with we many as it takes to feel truly heard.

Good luck and please join us for our various board threads, including the TTC (trying to conceive) checkin on Mondays.

trisholio

healz413 has made some great points and would be a great resource.  I do not have experience in many of the issues you are facing, but I wish you and your wife the best in your journey.  We have a great, supportive group on here, so welcome!

KH826

I would like to say welcome! @healz413 really did a wonderful job of summarizing some key considerations as well as resources our community here can offer you, so I won't even attempt to add to it! I will say that though your journey may be more complicated than some from the outset, I hope that you and your partner are able to remain hopeful about the path ahead to building your family no matter what choices you decide to make.

So welcome to our little corner of the Internet, and I look forward to hearing more from you as you embark on your journey!

valeriegp

If I were you, I would ask myself if 9-10 months of being pregnant was worth the health risks that could affect my ability to be the healthiest I could for my child for for those first hard months and years and the 18+ years following. To me, I'd pick the 18 years of being as healthy as possible over the 9 months.

I don't mean to sound simplistic and inconsiderate of your desire to be pregnant and the fear of how you can help your wife. But being a parent is a lot of work and demand on you physically, and I think sometimes we don't think about that.

2brides

I think this is certainly worth a conversation with your doctor to fully understand the risks. We were in somewhat of a similar situation - wife had a medical diagnosis and AMA (advanced maternal age) that would put her (and potentially) the baby at risk. It was a hard decision for her not to TTC/be pregnant and I do think that she has residual sadness over never carrying, but it also doesn't diminish the love she has for our kids. For us it boiled down to her being healthy and available to raise our children, just not give birth.

It is a personal and often heart wrenching decsion. Best of luck..

jaebirdistheword

Thanks everyone for your kind words and food for thought. 

Healz413, I want to answer all your questions, so I'm also going to number things. 

1. I am in the US. I live in Vermont, where our marriage is legal and I am currently on my parents insurance, although that runs out at the end of the year. If we wait until 2017 and remain in VT, we may have universal healthcare insurance from the state. If not, I'm likely to have private insurance through my wife's work. We will not start TTC without excellent insurance. I have looked into what my insurance covers, but because of how up in the air things are, I don't know what they will cover, and I am worried that just getting to the diagnosis of infertility is going to cost us thousands due to all the requirements. It looks like you guys might be able to give me some insight on that. 

 

2. When I had surgery last year, looking ahead to this, one of the things they did was check the patency of my tubes, and both were clear. That doesn't mean that my ovaries are going to release eggs once I start letting them again because they could be scarred up themselves, but at least the eggs could go somewhere. 

3. We have indeed considered reciprocal IVF. It is in fact my ideal situation. However, we are both young professionals starting out and because of my disability I only work part time. This means we don't have the money for IVF unless it gets covered by our insurance. If we decide to go ahead with IVF, we will definitely opt for reciprocal, but because my lady is healthy and fertile, it's unlikely to come to that. 

I would love to hear your thoughts on supporting your pregnant partner. That's one thing I am really concerned about. Because of a number of things, including my illness and our personality types, my partner tends to be the one who is strong and supportive. We have an equal relationship and there are plenty of ways I care for her, including helping her process emotions and deal with social situations, but for the most part I'm the one in pain or discomfort or fatigue and she's the one fetching things, if that makes any sense. 

As for gender, I think it will be fine and if she does end up carrying, we will certainly be interested in those resources and communities. It's funny, because I'm not terribly femme myself, but there is a definite difference. 

4. I have a wonderful Gyno who I will be talking with. Part of the impetus to post yesterday was the not so great experience I had talking to my pain doc about all this. My pain docs tend to have a single solution: get better, and then you won't have to take so many meds, and whatever the problem is (inconvenience, side effects, problems with having a baby) will be fine! Unfortunately this doctor is the best I've found so far. We've focused so much on finding the right meds to allow me to be functional, to help me go to PT, to help me work, and the idea of going off them is quite frightening. I've been having a very hard time finding providers who understand the intersection of queer and disabled. 

I can't shake the feeling that being a good mom means letting this go, means not spending all the money and endangering my health when I could simply allow my wife to carry, but it's very hard to let go of that dream. It's already a bitter pill to take that I can't simply have a child with the woman I love, without doctors and money and paperwork. I've never in my life wanted to get accidentally pregnant, and that's all I want now. But maybe thinking that I could carry is in the same category of fantasy as wanting to have my wife's baby. This disease has taken so much from me. I just hoped it wouldn't take this too. 

2MamazInSeattle

jaebirdistheword said:

I would love to hear your thoughts on supporting your pregnant partner. That's one thing I am really concerned about. Because of a number of things, including my illness and our personality types, my partner tends to be the one who is strong and supportive. We have an equal relationship and there are plenty of ways I care for her, including helping her process emotions and deal with social situations, but for the most part I'm the one in pain or discomfort or fatigue and she's the one fetching things, if that makes any sense. 

As a pregnant person of AMA (I will be *yikes* 43 when I deliver), I can tell you that honestly, for me, the support my wife provides isn't terribly 'physical' at all. It's far more emotional - checking in on how I am, telling me I'm doing a good job, when I had m/s, encouraging me and telling me I was handling it really well (which made me feel good ); now that we're further along, she reads to my belly each night and plays music for the baby before bedtime, and most nights rubs shea or cocoa butter lotion (free of toxins) on my belly. It's really simple stuff, but it adds up and means a lot - I am not at all feeling incapable of physical stuff. I still do household chores as before, take out the trash, laundry, dishes, cooking - you said you are both young, so I am guessing the needs your partner would have would be within your capability!

Now all that said, if she did have some complications that put her on bedrest or something, then yes, I suppose you'd need to look into alternatives. ANd of course as she nears delivery, she may *like* a little more help but she may not *need* it (i.e., I love when J gets me a glass of water, but I can get it myself) :. But if she has a 'normal' healthy pregnancy, which I have had from my point of view, I don't feel that I've needed to rely on her to 'take care of me' in terms of logistics/tasks, moreso just by being on my side, empathy, encouragement and - well this is nice too - she thanks me a lot for carrying for us. She knows it's not easy, and didn't want to carry a baby - so she is so happy to get to have a child this way.

Anyhow, hope that adds some perspective for you!