A Big Sister in Heaven

With managing the lingering computer problems in which a hard drive failure may have caused me to lose (in addition to a lot of work) many pictures of Miss Vivienne, I have not had much opportunity to write here.

The Wall Street Journal reported today on the emergence of surrogacy as a popular plotline in television, movie and theater entertainment in India.

"If everyone has an accepting heart, then nobody will remain without a child," says Mr. Raj Prabu, a scriptwriter of one show which aims to legitimize surrogacy. While the shows have soap opera-like plot twists and don't necessarily feature realistic portrayals, the Wall Street Journal reports that they are working to counteract views that surrogacy is akin to prostitution.

In India, where the funds provided to a surrogate may exceed what the family could otherwise earn in a year and thus allow schooling or other family opportunities that would otherwise be out of reach, one fictional plotline focuses on a family who uses the surrogacy funds to provide money for education and treatment of a child with cerebral palsy. There is certainly robust debate in the United States as to whether international surrogacy is "exploitation," because the payments to the surrogate mother are much less than what surrogate mothers receive here in the United States.

Surrogates here at home generally profess that they are carrying a child for another family not for primarily financial motivations, but out of compassion. Nevertheless, we have many vocal surrogacy opponents in the United States who view the arrangement similarly, using derogatory terms like "womb renting" and "baby farming" to describe the process. These critics tend to cast the arrangement starring soap opera-like villains, rather than medically infertile families who nevertheless wish to have, love and raise healthy and happy children. These apocryphal villains generally take the form of affluent women who selfishly choose not to carry their own children and therefore take advantage of a less educated, financially troubled young women, forcing them into something akin to reproductive prostitution. Alternately, the villain is the money-grubbing surrogate renting out her body to make an easy buck.

Elsewhere on this blog, I have cited statistics showing that these "villanous" descriptions of surrogacy aren't accurate. The vast majority of intended parents cannot (rather than choose not to) carry their own children, and the alleged financial and educational gap among intended parents and surrogate mothers is largely fictional. Furthermore, the higher-end of the compensation scale for surrogate mothers is approximately $30,000, which divided over 24 hours a day of nine months of pregnancy comes to about $4.60 per hour. Rather than making an easy buck, surrogate mothers who choose to carry for another family are working 24/7 for 9 months, risking their own health, inconveniencing their family, subjecting themselves to medical procedures and so forth, for less than minimum wage. And furthermore, there are many situations where surrogates undertake the pregnancy altruistically, to help a family in need in return for no compensation at all.

The programs discussing surrogacy are works of fiction, but then so are media descriptions here at home that portray surrogacy as prostitution-like "womb renting" or "baby farming". With that in mind, I want to say a big "THANK YOU" to those out there in the surrogacy community, including those who work toward education about the realities of surrogacy, those women who act as surrogate mothers, those who incorporate surrogacy into entertainment with the goal of showing it in a positive light, and so forth.

We have re-scheduled today's round of testing for October 6, 2009. So there won't be any news to report today!

I believe the technical problems with commenting have been resolved. Please do not hesitate to email me if there are any problems!

I had the opportunity to speak with our nurse at the fertility clinic today, who was so incredibly kind and patient and answered all of my questions without the least bit of hurrying. If you know how fast I talk and how much detail I put into every little thing, you know that listening to me can be an ultimate act of patience.

Anyway, we have a round of testing for Justin scheduled to take place next Tuesday. My testing will also begin on that date, but will be a little difficult. Typically, fertility tests for women include a blood hormone test and ovarian ultrasound done on day three of the woman's cycle. Unfortunately, because I have had a hysterectomy we can not use the normal methods of cycle-tracking. Thus, we will have to do a series of blood tests (which could take awhile) to pinpoint my cycle, and then do the testing once we've figured it out. I will have the first such blood test next Tuesday.

I have also determined the identity of the genetics clinic that will handle the PGD, if we decide to go that route - Dr. Mark Hughes of Genesis Genetics. I have not yet had an opportunity to poke around and digest the information that G.G. provides on its website.

Yesterday, while I was on a very long call with tech support that I could not break away from, our doctor at Penn Fertility called and left a message on my voicemail that she has some information to answer some of our questions about Pre-Implantation Genetic Diagnosis (PGD).

I did not address it in detail during my description of our big-deal First Fertility Clinic Visit, so I will summarize the issue. Justin and I have a very careful, ethical, moral, loving and difficult decision-making process we may need to pursue. When Vivienne was diagnosed with Aytpical Teratoid Rhabdoid Tumors (see Viva la Vivi for more information), she was found to have a germline INI1 (also called hSNF5 or SMARCB1) genetic mutation. Testing was done on Justin and me, and it was found that neither of us carry this mutuation at the germline level. The "germline level" simply means that it is a part of all of the DNA, and therefore would be passed on through reproduction. Germline mutations generally can arise in one of two ways: they can be inherited (from one or both parents) or they can be "de novo," meaning they happened randomly in the baby at the moment of conception (or very shortly thereafter) . In a "de novo" mutation, one cell copies the DNA incorrectly, and then as it splits into later cells (and they split, and so forth) they all carry the mutation. It starts from one bad cell.

A quick summary: Germline genetic mutations change the DNA in every cell in an affected individual, and therefore you can do blood tests for them. They are typically either "inherited" (they came from one or both parents) or "de novo" (random bad luck). Vivi had a germline mutation, which has been called de novo because Justin and I do not carry the germline mutation. If there is no element of inheritence from Justin or me, the chances of another of our children having AT/RT would be very remote (about on the order of .000001% x .000001%).

There is however, a very rare potential exception: gonadal mosaicism. Mosaicism exists when one person has essentially two sets of DNA, one in some cells and another in other cells. Gonadal Mosaicism would apply if some of either Justin's or my reproductive cells carry the mutation, which is possible even if our blood tests were negative for the mutation. If either of us has gonadal mosaicism, it would mean that Vivienne did inherit the mutuation from one of us and so another child could, too. The the chance of having another baby with AT/RT increases as compared to the chance of two children developing AT/RT from a de novo mutation. However, gonadal mosaicism seems to be a very rare condition and AT/RT is a very rare genetic disease (about 30 children per year in the United States are diagnosed).

However, AT/RT is an incredibly aggressive, poor-prognosis, almost uniformly fatal and absolutely devastating disease. I would not for a second "undo" Vivienne. If I think carefully about it, "better to have loved and lost than never to have loved at all" applies. Vivienne brought joy and happiness to everyone who knew her, and I count myself lucky to have known her. A world that never had Vivienne Esme Martin in it, would be a worse world. I would have less sadness, now, but I would not have the joy and the love that she taught me.

That said, the disease inflicted pain, suffering, surgeries, difficult treatment and death on her. We have decided to take any reasonable steps to determine our chances of another child of ours having to suffer from AT/RT or debilitating disease. We know we cannot predict with certainty a healthy life for our child, because humans cannot play God and we will not raise a child in a bubble that prevents them from having life experiences. But on the other hand, there are reasonable steps we can take.

One step is Pre-Implantation Genetic Diagnosis, which we discussed at length with our doctor at the fertility consultation. After arriving thinking that PGD could be used to essentially put a gold seal of genetic health on an embryo and learning instead that we can look for certain conditions but not rule out all, we have some thinking to do. It also may be that the type of genetic changes caused by AT/RT are not discoverable by PGD. The doctor informed us that the lab they use had never run such a test before (she was able to jump on the computer and look that up, while we were talking, which made me just adore her). That alone does not mean it cannot be done, and she was going to talk with the lab, talk with Dr. Biegel at Children's Hospital of Pennsylvania (the geneticist who tested our family last July) and get back to us.

The call yesterday was for the purpose of answering some of those questions. Unfortunately, we traded voicemail messages but were unable to get in touch yesterday. With that in mind, I am excited and nervous in hopes of receiving more information on Monday. In addition, we have not yet had any success in our attempts to schedule the necessary round of fertility testing, so I am eager to ask the doctor's help in starting that process.

More updates to come, obviously!

As I have mentioned in a previous post, I follow the American Society for Reproductive Medicine on Facebook. It is one of the more interesting groups I follow, because it presents a really wide variety of articles that come from different perspectives. In that way, it gives me diverse food for thought without consistently reproducing the same point of view.

I don't comment on most of the articles, primarily because the world of infertility involves so many different struggles and many of them do not hit my particular niche interests. But more and more often, I am finding the urge to comment. What really grinds my gears is the assumption that families using Assisted Reproductive Technologies (ART) to overcome the disease or medical condition of infertility are selfish, or doing so because they want designer children, or are all some version of Jon and Kate or the Octomom.

This week, Jessica Shattuck of the Boston Globe, in an article called "Mad Science and the Family" wrote an irresponsible and offensive article that does a disservice to the many families, like mine, who have faced down tragedy in one form or another to work to have a family in cooperation with doctors who are by and large guided by sound ethical principles. Ms. Shattuck instead chooses to focus on a comparison of infertility treatment (of any kind) with the mad scientist of science fiction:

This could be the beginning of a revolution: We have the technology to become a world of Michael Jacksons, crafting little disciples from various combinations of genetic material, or a nation of Jon and Kates (Why have only one baby when you could have six?). We could create baby farms or clone colonies as sci-fi movies and books have envisioned for years.

I take particular issue with one of her phrases: "Why have only one baby when you could have six?". What Ms. Shattuck fails to realize (or willfully ignores for the sake of an attention-grabbing article) is that ART is pursued primarily by families who cannot simply have one baby. Certainly there are notorious exceptions, but infertility treatment (and particularly In-Vitro Fertilization) is prohibitively expensive for most families. With the cost to achieve pregnancy through IVF running $6,000-$25,000 (source), with the average in my general reading being approximately $13,000, it is not a procedure of convenience. The vast majority who can have children 'in the natural way' do so. Infertility treatment is a path of last resort for those who have suffered cancer, sterilization (like me), unexplained infertility, PCOS and other reproductive disease.

Shattuck goes on to question:

What constitutes “maternity’’ and “paternity’’ in an age when biology is just one kind of connection a mother or father can have with their child?

She fails to (or again, chooses not to) recognize or understand that humankind has always existed in an age where 'biology is just one kind of connection' between parents and children. Adoption, step-parenting, foster care, grandparent custody and surrogate motherhood have existed throughout history. As I've said before, non-biological parenting relationships go back through the Bible and early written history:

The Code of Hammurabi, for example, details the rights of adopters and the responsibilities of adopted individuals at length while the practice of adoption in ancient Rome is well documented in the Codex Justinianus. (source)

Further, Shattuck fails to account on any level for the history of success found in alternative-parentage families (a term I am using to encompass all arrangements other than married, heterosexual biological parents). A peer-reviewed, longitudinal study on adoptive families found that "adoptive parents allocate more economic, cultural, social, and interactional resources to their children than do parents in all other family types" (source). Material exists finding similar results for families achieved through ART, both where surrogacy is included and where the parents are genetic, intended and gestational.

Shattuck concludes by endorsing the valuation of a "traditional" family above all other types. From her criticisms of the process of divorcing biology and the parenting process, I assume that for her no relationship other than married, heterosexual biological parents is ideal. While she is welcome to this opinion, it fails to take into account the history of successful non-biological parent-child relationships. Given humankind's inability to wholly prevent every case of separation of children from their biological parents, or to cure infertility with one poorly-written, unresearched and judgmental article, I would argue that embracing alternative family definitions is far more beneficial to children (and to our societal ethics) than simply marginalizing those who are different or less fortunate.

This is not to deny that there are ethical challenges inherent in ART or that sometimes (notoriously in the case of the Octomom) the ethical guidelines fail. On the other hand, a view that those pursuing IVF are doing so for the convenience of genetically engineering the characteristics of their child is patently unconnected to the reality faced by the infertile couples wishing to have children. On the whole, I find the factual premises of the article so un-researched and so unfounded, and the examples given so unrealistically provocative, that I almost think the article must have been written as a joke.

Whether it is to be taken at face value or a simple ploy for online advertising revenue, I felt compelled to respond to the article and speak up in defense of families who are infertile, families reflecting non-biological relationships and the practitioners of ART who in my experience, bear nothing in common with a mad scientist.