6) FAQs

In sharing about my new journey, the concept around the surrogacy itself was inconsequential.  My friends and family are fully aware of how passionate about surrogacy I’ve become and have heard all of my soapbox proclamations about the how and the why.   However, they had plenty of questions and comments about how J having HIV would play into it all, the following being the most prominent:

• Have you really thought about this? Are you sure you know what you’re doing?  What about your family?

Yes, I have thought and researched this thoroughly.  Admittedly, when I began my first surrogacy journey, I did less research than I should have and was seriously underprepared for all it would entail.  I have learned my lesson.  I have researched multiple clinics and studies online.  I have spoken with people both at my surrogacy agency and at the reproductive clinic.  I have spoken with other surrogates who have gone through this.  I have spoken with a woman whose husband is HIV positive who underwent this process of IVF fifteen years ago.  We will not go through with the process if at anytime along the way any of the doctors at any of the clinics believe for any reason that it is not a good idea. 

However, I live by the motto “Hope for the best, plan for the worst”.  Our contract will have a fair amount of added precautions and coverage for all of the various added “what ifs”.  What if I am the FIRST PERSON EVER to contract HIV from this process?  I’ll ask then for all subsequent related medical expenses—insurance premiums, copays, prescriptions, etc—to be covered by J & A.  Most surrogacy contracts already include a significant life insurance premium, but with this particular journey, I’ll ask for that amount to be increased, and again IF I was the FIRST PERSON EVER to become infected through this process for them to cover my premium indefinitely. 

Originally I considered adjusting the base compensation as well.  That comp is for the pain and suffering of being pregnant.  The pain and suffering of being pregnant includes the stress it causes, both for the pregnant woman and her family.  I thought this particular journey might bring with it added stress.  However, the more I research, the more I find that it really isn’t that big of a deal and there really isn’t much to be more stressed about.  Sure, I’ll have a couple extra doctor appointments and have to meet a couple extra requirements, but overall I’m not any more concerned than I am just with the general idea of being pregnant for a fifth time.

• Are you crazy?

Okay, no one has come right out and said that, but I’m no dummy.  I know what some of them are thinking.  Yes, I think it’s been well established since I was about thirteen that I am crazy. However, the psychologist that evaluated me says that I’m fit to do this, so I’m taking her word for it.  I don’t think I’m any more crazy for doing this than I am for teaching special education at an alternative high school in rural Oregon.  Or for moving back to Klamath Falls.  Or for having three of my own children.  Or for sticking it out with my husband.  There are lots of reasons for a person to consider me crazy; doing a second surrogacy for a serodiscordant couple is probably on some people’s list.  But all those things that make me crazy also make me pretty awesome.  Life is too short to not do crazy things that bring joy to you and your family.

• What precautions do I have to take prior, during, and after pregnancy?

I am still figuring this part out.  Prior to the embryo transfer, there is a process, as explained in an earlier post, to wash the sperm.  Essentially, the semen is tested for HIV, and if it is undetectable, the sperm is “washed” where it is separated from the semen (as the virus lives on the semen, not on the sperm) and that clean sperm is used to fertilize an egg.  During and after the pregnancy, I will be tested for HIV multiple times.  This includes a blood draw.  With my last surrogacy, I had about eight thousand blood draws from the time I started the medical eval process to the time I had my six week post-partum check-up, so I don’t see how I’ll even notice the difference this time.  I’m also curious about the possibility of being asked to take Truvada, a form of pre-exposure prophylaxis, or PrEP.  Truvada is a preventative drug for people at risk of becoming infected with HIV.  For heterosexual serodiscordant couples where the male is HIV-positive but undetectable, it is now common practice if they want to conceive for the woman to take PrEP for a period of time and then have unprotected intercourse during ovulation (I know, the technical jargon of getting pregnant in these scenarios is not as sexy as it should be).  The CDC has issued guidance on this, but I have not yet found substantial research on it in regards to IVF, where the woman is already taking a significant amount of medication.  I should be talking with the SPAR program doctors in July and will find out more then.  I’ll let you know. 

• When you’re HIV-positive, you just don’t get to have biological kids. 

Well, actually yes you do.  Maybe twenty years ago that was true, just logistically.  But science and technology and medicine have come an incredible way since we first discovered HIV/AIDS, and incredible strides have been made in assistive reproduction as well.  Once we start determining who is and who is not able to benefit from that technology, we cross a very dangerous line.  Women who have, for one reason or another, lost us of their reproductive organs are able to have biological children via surrogate.  Men and women who have various other medical concerns, some much more dangerous than treated HIV, are able to have children.  While I absolutely agree that a surrogate has the option to carry or not carry for certain populations and I would absolutely never expect a surrogate to carry for someone that did not fit within her moral framework, it is not up to us to determine who is able to reproduce given the means. 

Quite frankly, there are lots and lots of healthy heterosexual couples out there making and raising babies who probably really shouldn’t be making and raising babies.  But, The Universal Declaration of Human Rights, Article 16, states Right to Marriage and Family.  Those are universal rights—meaning for everyone, not just whom you think should.  If we put restrictions on HIV-positive people having children, where then do we draw the line?  Are people with cancer out?  What about mental illness?  Diabetes?  Of course not.  I’ve no doubt that J & A will be amazing parents regardless of their sexual orientation or their HIV status.  Maybe even more so because of, considering all the recent research indicating that children of gay parents are doing just fine. And, from what I can tell, the HIV thing is not too much of a parenting issue, which leads me to the next question.

• What precautions do the dads have to take after baby is born and throughout her life?

I have searched and searched and tried to find some research on this topic and keep coming up empty handed. Everything I find is about parenting a child with HIV, not caring for a child as a parent with HIV.

The other day I was virtually introduced to a friend of a friend who works in the assistive reproduction field and had heard about my journey and blog.  She reached out to me and we had a really great conversation.  Her husband is HIV-positive and she went through this process and IVF to conceive their children fifteen years ago.  When she asked about what questions I had, this was one I posed to her.  As I talked with her I realized why it was that I was unable to find any research on the topic: there is nothing to research.  The HIV virus is found in blood, semen, vaginal fluid, breast milk, and saliva.  Although it is found in saliva, it is not able to infect new cells through saliva and is therefore not considered a means of transmission. 

Now, those of you who are parents: With the exception of breast milk, which is its own conversation and frankly not one of concern for J & A who for obvious other reason won’t be breastfeeding their child (although I’ve offered to pump for a period of time), how often has your child come in contact with any of those fluids of yours?  How often has your child been exposed to your blood, semen, or vaginal fluid, with the real chance of it mixing with their own bodily fluids?  If the answer is more than never, there is a serious problem with your parenting.  The woman I spoke with said her husband gets occasional nosebleeds, and that he is especially cautious of disposing of the garbage.  Although I suppose he is more so than we are, guess what: I also try to make sure my kids don’t play with my bloody tissues.  Additionally, she said that they are particularly careful with his razors and make sure they are out of reach.  Well guess what: I also try to make sure my small children don’t get ahold of and play with our razors. 

The exception to the previously stated saliva transmission is if there is blood mixed with the saliva, which can happen when we brush our teeth.  I have heard of HIV-positive parents being cautious with kissing their children immediately after brushing their teeth.  But I gotta say, I can’t recall a time my saliva mixed with my kids’ saliva when we kissed.  If you are regularly mixing your saliva with your kids’ when you kiss, you might consider taking a step back on your level of family intimacy. 

Even so, when suppressed (when the viral load, the presence of HIV particles, is below 200 copies per ml), transmission is minimal, if at all.  A recent study indicated in the two years it’s been conducted thus far, the risk of transmission is about 4% for anal sex and 2% for vaginal sex.  By faithfully taking ART medication and keeping the viral load down, a person with HIV has a very, very low chance of passing the virus to anyone else. Oregon Health & Science University is in the beginning phases of an HIV vaccine clinical trial.  This is a fascinating breakthrough with immeasurable impact if successful.  If successful, I imagine little surrobabe would be first in line for the vaccine. 

In addition to some precautions, there is some concern about the parent’s ability to care for children due to an increased likelihood of illness and premature death.  While this is certainly the case in developing countries without access to medical treatment, that’s not so in the US.  The life expectancy for a person with HIV is about 13 years less than the average life expectancy, and only 8 years lower for those who started treatment early on, including J.  It’s only 6 to 7 years lower if the person does not have a history of hepatitis B or C, or drug, alcohol, or tobacco abuse.  The CDC sums it up nicely: get diagnosed; take medication; live about as long as anyone else.  In 2012, there were 13,700 AIDS related deaths.  Since 2005, it is the least-common cause of death reported by the CDC, at 2 per 100,000 in 2014.  Anxiety and other mental health disorders also negatively impact a person’s life expectancy by at least six years.   In 2014 there were 42,773 suicides.  But no one has ever questioned my husband’s innate right to have and raise biological children. 

There are some Opportunistic Infections (OIs) that are particularly harmful to a person with HIV.  I did some preliminary research on living a healthy HIV-positive lifestyle.  Multiple studies and websites indicated you should eat healthy foods low in sugar, fat, and oil.  Exercise and keeping fit is encouraged.  Getting adequate sleep and reducing stress is important.  As well as having a strong support system.  All of which sounds exactly like what is suggested for Every. Single. Person. Everywhere. 

Of course, I don’t by any means want to minimize the importance of not transmitting HIV to your family.  As much as medicine and technology have progressed in regards to HIV prevention and treatment, I don’t think anyone wants to have it or to pass it to someone else.  But, when undetectable to actually pass it on is not easy, and the prevention of it is not something that needs more than just some basic precautions. 

As we progress along in this journey, I’m sure my family and I will have many more questions, and I’m sure J & A will as well.  But so far it’s been an interesting learning experience for me.  With a bachelor’s and two master’s degrees and working in education, I consider myself somewhat of a career student.  This is just one more way to feed that need.  One with a much cuter outcome than a paper diploma.