Surrogate Pregnancy After Prenatal Diagnosis of Spina Bifida Lynnette J. Mazur, MD, MPH, a Mary Kay Kisthardt, JD, LLM,b Helen H. Kim, MD,c Laura M. Rosas, BBA,a John D. Lantos, MDd

Some pregnancies today involve infertile individuals or couples who abstract contract with a fertile woman to carry a pregnancy for them. The woman who carries the pregnancy is referred to as a “gestational carrier.” The use of such arrangements is increasing. Most of the time, these arrangements play out as planned; sometimes, however, problems arise. This article discusses a case in which a fetal diagnosis of spina bifida led the infertile couple to request that the gestational carrier terminate the pregnancy, and the gestational carrier did not wish to do so. Experts in the medical and legal issues surrounding surrogacy discuss the considerations that should go into resolving such a conflict.

The number of births that follow consultation at 21 3/7 weeks’ surrogacy arrangements involving gestation. The pregnancy was the a gestational carrier is at an all-time result of in vitro fertilization (IVF); high in the United States. 1 Typically, the patient was a surrogate. The a in these cases, an infertile individual University of Texas Health Sciences Center, Houston, Texas; intended parents lived in Europe. bUniversity of Missouri–Kansas City School of Law, Kansas or couple makes an arrangement with Because surrogacy was illegal in City, Missouri; cDepartment of Obstetrics and Gynecology, d a woman who is capable of carrying their country, an American lawyer University of Chicago, Chicago, Illinois; and Children’s Mercy Kansas City, Kansas City, Missouri a pregnancy to bear a child and then initiated the contract between the turn that child over at birth to the couple and the surrogate. After a few All authors contributed to the design of the article, the drafting of the manuscript, and the review infertile individual or couple. In some months of legal, psychological, and cases, the egg and sperm come from of the manuscript. All authors approved the fi nal medical preparations, an egg from version. the contracting couple. In other cases, an anonymous donor was fertilized the egg comes from an oocyte donor DOI: 10.1542/peds.2016-2619 with the father’s sperm, and the or, less often, from the gestational Accepted for publication Aug 8, 2016 resultant embryo was implanted in carrier (an arrangement called Address correspondence to John D. Lantos, MD, the surrogate. The agreement was for traditional surrogacy). The parties Children’s Mercy Kansas City, 2401 Gillham Rd, the intended parents to take the child to such arrangements sign legal Kansas City, MO 64108. E-mail: [email protected] contracts. Sometimes, money changes back to their country; the surrogate PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, hands; in other cases, the surrogacy would have no future rights or contact 1098-4275). is altruistic. All such arrangements with the child. Copyright © 2017 by the American Academy of are fraught with potential conflicts. Pediatrics When such contracts arise, the courts An ultrasound showed a male fetus FINANCIAL DISCLOSURE: The authors have may be called upon to resolve them. In with SB at the second sacral level. No indicated they have no fi nancial relationships relevant to this article to disclose. this Ethics Rounds, we present a case hydrocephalus or other anomalies of surrogacy in which the fetus was were noted. Shortly after the doctor FUNDING: No external funding. diagnosed with spina bifida (SB) and introduced herself to the pregnant POTENTIAL CONFLICT OF INTEREST: The authors analyze the conflicts that followed. woman, she said that she was not have indicated they have no potential confl icts of interest to disclose. the mother. She called herself "the toaster.” She suggested calling the THE CASE intended parents to discuss SB. The To cite: Mazur LJ, Kisthardt MK, Kim HH, et al. A 32-year-old G3P2 female patient father spoke some English; his wife Surrogate Pregnancy After Prenatal Diagnosis of Spina Bifi da. Pediatrics. 2017;139(2):e20162619 presented for a prenatal pediatric did not. Over the course of 45 minutes,

Downloaded from www.aappublications.org/news by guest on September 28, 2021 PEDIATRICS Volume 139 , number 2 , February 2017 :e 20162619 ETHICS ROUNDS the doctor explained the expected can be traditional or gestational. the principle of autonomy, it is challenges that their son may In traditional surrogacy (natural, impossible either to prevent her or develop. partial, or straight surrogacy), the to force her to have an abortion. 5 She surrogate is impregnated naturally or retains the right to confidentiality In general, the disabilities depend artificially with the intended father’s and the right to determine what on the level of the lesion; the higher sperm, and the child is genetically information about the pregnancy the the defect, the more adverse the related to both the surrogate and health care providers can share with outcomes. Neurologically, most the father. In a gestational surrogacy the commissioner(s). children with SB have an IQ in the (full, host, or IVF surrogacy), the normal range but many having In view of the fetus’ birth defect, embryo, resulting from the intended learning difficulties. In this case, both parties questioned the father’s sperm and an egg donor, because of the low level and the agreement. Each wanted to do is implanted in the surrogate and absence of hydrocephalus, the need what was in their best interest, the is biologically unrelated to her. for a ventriculoperitoneal shunt principle of ethical egoism. The Either form can be commercial (the was considered unlikely. However, surrogate wanted to continue the surrogate is compensated by the because sacral nerves are needed pregnancy, and the couple did not commissioners) or altruistic (the for bladder and bowel function, the want a child with SB. However, surrogate has reasons other than infant would be at risk for recurrent given their conflicting desires, financial gain). Our patient was a urinary tract infections and declining who should make the decision? commercial surrogate. renal function. Daily intermittent A termination may adversely affect bladder catheterizations and Surrogacy is especially complex the surrogate’s health, her ability medications to prevent leaking might because the interests of the intended to care for her current children, or be needed. Sensory deficits in the parents, the surrogate, her spouse her future pregnancies. It may be genital area may require medications (if she has one), and the future child, against her beliefs or it may be too for future erectile dysfunction. In may differ. Cases with international late in the pregnancy to perform. addition, constipation is a common contracts have unique complexities. Accordingly, adoption would be an problem and can lead to leaking When unexpected fetal defects are option; the surrogate could follow of stool, recurrent urinary tract encountered, both parties may her conscience, and the couple would infections, pressure ulcers, and shunt face ethical, legal, medical, moral, not have to raise the child. Payments malfunction. Orthopedically, the and practical dilemmas. Given the and/or reimbursements for both muscles innervated by the nerves time limitations on a postviability the surrogate’s and the infant’s below the defect will be weak. termination or a late-term abortion medical expenses would need to be Children with sacral defects usually (after 20 weeks’ gestation) and determined. walk without assistive devices, but for fetal surgery (before 26 weeks’ Other important questions remain. orthotic devices for ankle stability gestation), a timely legal settlement For the surrogate’s family, what and protection of the feet will likely may not be possible. be needed. Sensory deficits place are the psychological consequences him at risk for pressure ulcers and How do the involved parties address for the surrogate’s family of fractures. 2 these issues? By the nature of the relinquishing their child/sibling? agreement, both parties voluntarily Our patient stated that her own After explaining these challenges, accepted some restrictions on their children were confused about her the couple stated that they did not autonomy. It follows that neither pregnancy. One afternoon her want to raise a defective child. They party should unilaterally change their daughter’s kindergarten teacher preferred an abortion but would mind after the start of the pregnancy. asked for clarification of her consider in utero correction. The In addition, because the surrogate daughter’s statement “My mommy surrogate objected to a termination freely entered into the contract, she is pregnant but he is not our and because of the low level of accepted other restrictions to her brother.” What are the consequences the lesion, she was not a surgical autonomy. She is expected to follow if the surrogate keeps in contact candidate. 3, 4 a healthy lifestyle and attend regular with the resulting family? For the physician visits. Although she has commissioning parents, what are the Lynnette J. Mazur/Laura M. Rosas a prima facie obligation to accept legal consequences of breaking the Comments the advice of the obstetrician that contract? What is the risk of rejection The first successful surrogate will ensure the best outcome for or risk of the child being the object of pregnancy (ie, the carrying of a herself and the child, she cannot be conflict between the parties? What pregnancy for other intended forced to accept a cesarean delivery information is shared with the child parents) occurred in 1985. Surrogacy (CD) for a child with SB. Also, given as he matures? For the egg donor,

Downloaded from www.aappublications.org/news by guest on September 28, 2021 2 MAZUR et al is there a duty or a responsibility to require a gestational surrogate of the discussion because they help to find and inform her about her to abort a fetus at the request of to inform the decision. I do not think future risk for children with SB? the biological parents. A contract that there is a single right answer to This knowledge may lead her and with such a clause would thus be these questions. Instead, I think there her female relatives to receive unenforceable. 9 Contracts could is a need for open, honest discussion folic acid supplementation before raise the issue, however, to begin a that will, as its goal, help the becoming pregnant in an effort to discussion between the surrogate parties involved come to a mutually prevent SB. For the child with SB, and the intended parents to gauge agreeable plan. what is his fate and who will pay his their ability to agree on a decision medical expenses? For the remaining when a change of circumstances To me, this case is ideal for a embryos, what is their fate? For the occurs. That is not to say that mediation process (again revealing health care provider counseling the any pre-pregnancy consensus my professional bias) because surrogate and the commissioning will necessarily continue once a these implications can only be fully parents, how does he or she maintain pregnancy has begun (I believe that explored through conversation. neutrality when presenting both most women who have carried a As a mediator, I would hope to not parties with difficult choices? child would agree that there is a only allow the parties to consider fundamental difference between an the legal implications but to begin Mary Kay Kisthardt Comments imagined fetus and the one you are to turn the discussion to a common goal of advancing the best interest This case raises complex ethical actually carrying in your womb), but of the child. How do the intended issues and even more complicated it is a good starting point. parents view a child with health legal issues. I am a law professor and issues? Is their desire to terminate thus will focus primarily on the legal However, in this case, we are left based on a concern about their issues. with the need to make a decision when those conversations have not ability to meet his needs both The development of the law related taken place. The key question is how financially and otherwise? Is their to enforcement of surrogacy to facilitate those conversations now sense of disappointment in not contracts has had a tortured course. 6 that the parties are facing significant having a “normal” long-desired child The complexity relates both to the time pressure as well as possible influencing their judgment? Is the complicated nature of the underlying language and cultural barriers. gestational surrogate’s objection to issues but also to the fact that, in The intended parents’ desire to the abortion a religious one? A moral the United States, legal rules in consider a “correction” may indicate one? How does she feel about raising this domain are made by the states that there may be room for further the child? How will she feel if she and thus vary from state to state. consideration, especially in light of carries the child to term and then is Many states accept the notion of the fact that the surrogate will retain unable to keep him? “intentional parenthood” and bestow the right to carry the pregnancy rights to the legally recognized The implications of the decision will to term. If we start with that parents even if they are not the no doubt have lasting effects on all assumption, the focus can then shift biological (or gestational) parents. 7 the parties involved. At a minimum, away from the immediate decision However, parents do not always get they deserve the opportunity to to the long-term consequences of it. the right to make decisions regarding engage in a meaningful conversation If the child is carried to term, who their children, especially where the about them. will be responsible for his care? exercise of those rights conflicts with Does the gestational mother intend the rights of another adult who might Helen H. Kim Comments to raise him? Most gestational be considered to be a parent or with surrogates are without the resources In 2012, I experienced “15 minutes somebody’s perception of what is in to raise another child. If she does, of fame” when I helped “Grandma the best interest of the child. the courts will undoubtedly require to give birth to her grandchild (as There is an obvious legal deficiency financial support from the intended reported by the Today Show).” 10 The here: the absence of any language parents. What if she wishes to raise intended parent had a hysterectomy in the contract regarding decisions him but the intended parents wish for the treatment of cancer. Her during pregnancy. Most surrogacy to place him for adoption, thereby 52-year-old mother carried the contracts now contain clauses related terminating both their rights pregnancy. This case was the story of to selective reduction in the case of a and their duty to support? As the an altruistic woman who served as multifetal pregnancy or abortion in legal parents of the child, they are a gestational carrier out of love and the event of a potential birth defect. 8 presumptively entitled to do so. delivered a healthy infant after an Courts do not have the authority These questions should all be part uncomplicated pregnancy.

Downloaded from www.aappublications.org/news by guest on September 28, 2021 PEDIATRICS Volume 139 , number 2 , February 2017 3 In contrast to that heartwarming medical condition that would be the intended parents and gestational story, the present case is a contraindication to pregnancy. carrier should occur before embryo heartbreaking. After birth, it is In addition, because gestational transfer to confirm that their values possible that the infant will have no surrogacy is illegal in some countries, are aligned. Although the human parents. The parties were strangers an increasing number of patients response to a particular situation who met via a lawyer. They did are seeking this service in the is never completely predictable, not have a preexisting relationship United States. In 2013, 18.5% of it is hoped that adequate pre- and most likely never developed a US gestational carrier cycles were pregnancy counseling and discussion relationship. They live in different performed for non-US residents (in would allow intended parents and countries and do not speak the same contrast to 9.5% in 1999). gestational carriers to prepare for language. When an unexpected various pregnancy outcomes and The use of gestational carriers has pregnancy complication developed, develop matching expectations. always been controversial due to they disagreed on the best course of Unfortunately, such preventive concerns regarding commodification action. After learning that the fetus measures do not always work. of the body or infant selling, but for has SB, the intended parents no many, gestational surrogacy is the So, how should the present case longer want the infant; they prefer only option for genetic parenthood. be resolved? Because abortion is that the pregnancy be terminated. Generally, gestational carrier cycles illegal after 24 weeks’ gestation, a The gestational carrier, however, are very successful. As reported by decision to terminate the pregnancy objects to pregnancy termination, an Perkins et al, 14 among US clinics would have to be made quickly. invasive procedure, and thus does reporting to the Centers for Disease Pragmatically, if an agreement is not not give her consent. Control and Prevention (CDC) reached, the infant will be born. A little history might put this case between 2009 and 2013, gestational Deciding to terminate a (previously) in context. In 1978, the birth of carrier cycles had higher rates of live desired and planned pregnancy is Louise Brown, the first human infant births (41.5%) than nongestational always difficult—and is even more born after IVF, proved that viable carrier IVF cycles (36.5%). difficult with a third party. When embryos could be generated in the Consequently, the use of gestational multiple parties, from different laboratory. 11 Although IVF was carriers is becoming more common backgrounds, are involved in 1 initially developed to treat tubal and more widespread. The number of pregnancy, there is great potential infertility, the ability to generate gestational carrier cycles reported to for conflict. The best outcome would embryos outside the body allowed the CDC increased from 727 cycles in be for the couple and the gestational for third-party reproduction, using 1999 to 3432 cycles in 2013. During carrier to come to an agreement, oocyte donors and gestational the same time period, the number but it will be difficult for them to carriers. By synchronizing the of clinics performing gestational build rapport and have a meaningful uterine lining with the development surrogacy increased from 167 in discussion when they are not in the of the embryo, embryos generated 1999 to 324 in 2013. By 2013, 85% same room and do not speak the with eggs from 1 woman could be of the clinics reporting to CDC offered same language, a scenario which is implanted in the uterus of another. gestational carrier treatment. not uncommon. The first pregnancy using donor With the increased prevalence of Even if the gestational carrier had oocyte was reported in 1984, 12 gestational surrogacy, efforts are previously agreed to pregnancy followed in the next year by the first needed to avoid heartbreaking termination, she may feel pregnancy in a gestational carrier. 13 situations such as the one described differently now. Her refusal to Between 1999 and 2013, there in the present case. The American have an abortion may be a breach were 1 664 844 cycles of assisted Society for Reproductive Medicine of the surrogacy agreement with reproduction in the United States that (ASRM) practice committee has financial implications, but she resulted in embryo transfer, of which recommendations for practices cannot be forced to undergo an 30 927 (1.9%) used a gestational utilizing gestational carriers. 15 These invasive medical procedure without carrier.14 Now, with gestational include psychosocial consultation her consent. Both the American surrogacy, patients who are unable for both gestational carriers and Congress of Obstetricians and to carry a pregnancy are able to have intended parents. Recommended Gynecologists 16 and the ASRM 17 genetic children. Indications for counseling topics include pregnancy support the gestational carrier’s right gestational surrogacy include lack of scenarios, such as multifetal to “autonomous decision-making.” normal uterus (due to hysterectomy, pregnancy reduction, prenatal The ASRM ethics committee opinion uterine abnormality, or lack of female diagnostic testing, and elective states “the carrier has the ultimate partner) or the presence of a serious termination. Discussions between authority about any procedures on

Downloaded from www.aappublications.org/news by guest on September 28, 2021 4 MAZUR et al her body and cannot be compelled to whether they are capable of raising 6. Margalit Y. In defense of surrogacy submit to a procedure regardless of a child or whether they truly desire agreements: a modern contract law the contract.” 15 to have one. With surrogacy, as with perspective. William Mary J Women adoption, the law is called upon to Law. 2014;20:423–468 Thus, although this case is complex, attempt to define the responsibilities the right answer is clear. The 7. Mortazavi S. It takes a village to that parenthood entails. But the make a child: creating guidelines for pregnancy should not be terminated law is a blunt instrument. It is not international surrogacy. Georgetown without the consent of the gestational surprising that dilemmas sometimes Law J. 2012;100:2249–2290 carrier. If the contracting couple will arise in these complicated gestational not take the infant, the infant will 8. Kern B. You are obligated to terminate arrangements. It is, perhaps, more need to be put up for adoption. this pregnancy immediately: the surprising that they do not arise contractual obligations of a surrogate more often. to abort her pregnancy. Available at: http:// papers. ssrn. com/ sol3/ papers. RESOLUTION OF THE CASE cfm? abstract_ id= 2478011. Accessed This case had a happy ending. The August 4, 2016 ABBREVIATIONS surrogate agreed to give birth to the 9. Forman DL. Abortion clauses in infant via cesarean delivery, and the ASRM: American Society for surrogacy contracts: insights from intended parents decided to keep Reproductive Medicine a case study. Family Law Quarterly. the infant. The defect was surgically CDC: Centers for Disease Control 2015;49(1):29–53 repaired shortly after birth. and Prevention 10. Carroll L. Woman about to give birth IVF: in vitro fertilization In general, surrogacy agreements to her own grandchild. Available at: SB: spina bifida are binding for the commissioning www.today. com/ health/ woman- about- parents in cases of birth defects or give- birth- her- own- grandchild- 972112. a multiple pregnancy. Regardless Accessed December 1, 2016 of what was stipulated in the REFERENCES 11. Steptoe PC, Edwards RG. Birth after the agreement, the child or children reimplantation of a human embryo. born are their responsibility. 1. Perkins KM, Boulet SL, Jamieson Lancet. 1978;2(8085):366 However, timely enforcement and DJ, Kissin DM; National Assisted 12. Lutjen P, Trounson A, Leeton J, legal arguments may leave the child Reproductive Technology Surveillance Findlay J, Wood C, Renou P. The without permanent placement while System (NASS) Group. Trends and establishment and maintenance of awaiting resolution. outcomes of gestational surrogacy pregnancy using in vitro fertilization in the United States. Fertil Steril. and embryo donation in a patient In 2013, ~67 000 infants were 2016;106(2):435–442.e2 with primary ovarian failure. Nature. born in the United States through 2. Spina Bifi da Association. What is 1984;307(5947):174–175 IVF. About 2% of those (ie, >1300 spina bifi da? Available at: www. births) were through surrogacy 13. Utian WH, Sheean L, Goldfarb JM, Kiwi spinabifi daassociation. org. Accessed R. Successful pregnancy after in vitro arrangements. Even if 99% of August 4, 2016 fertilization and embryo transfer from cases go well, there will still be an infertile woman to a surrogate. many cases that raise legal and 3. Adzick NS, Thom EA, Spong CY, et al; MOMS Investigators. A randomized N Engl J Med. 1985;313(21):1351–1352 ethical controversies. Health care trial of prenatal versus postnatal providers need to know not just the 14. Perkins KM, Boulet SL, Jamieson repair of myelomeningocele. N Engl J DJ, Kissin DM; National Assisted medical issues associated with such Med. 2011;364(11):993–1004 Reproductive Technology Surveillance pregnancies but the legal and ethical System (NASS) Group. Trends and ones as well. 18, 19 4. Danzer E, Thomas NH, Thomas A, et al Long-term neurofunctional outcomes of gestational surrogacy outcome, executive functioning, and in the United States. Fertil Steril. 2016;106(2):435–442.e2 JOHN D. LANTOS COMMENTS behavioral adaptive skills following fetal myelomeningocele surgery. Am 15. Ethics Committee of the American Surrogacy arrangements involving J Obstet Gynecol. 2016;214(2):269. Society for Reproductive Medicine. gestational carriers have shed a new e1–269.e8 Consideration of the gestational light on an old dilemma about the carrier: a committee opinion. Fertil 5. Shenfi eld F, Pennings G, Cohen J, Steril. 2013;99(7):1838–1841 responsibilities that go along with Devroey P, de Wert G, Tarlatzis B; bringing a child into the world. There ESHRE Task Force on Ethics and Law. 16. Ryan GL; American College of is no licensing agency for parenthood. ESHRE Task Force on Ethics and Obstetricians and Gynecologists’ For anybody with the natural ability Law 10: surrogacy. Hum Reprod. Committee on Ethics. ACOG Committee to have a child, they can have one 2005;20(10):2705–2707 opinion no. 660: family building

Downloaded from www.aappublications.org/news by guest on September 28, 2021 PEDIATRICS Volume 139 , number 2 , February 2017 5 through gestational surrogacy. Obstet utilizing gestational carriers: an ASRM 19. Sunderam S, Kissin DM, Crawford Gynecol. 2016;127(3):e97–e103 Practice Committee guideline. Fertil SB, et al; Centers for Disease 17. Practice Committee of the American Steril. 2012;97(6):1301–1308 Control and Prevention (CDC). Society for Reproductive Medicine; 18. Brown SD, Feudtner C, Truog RD. Prenatal Assisted reproductive technology Practice Committee for the Society decision-making for myelomeningocele: surveillance—United States, for Assisted Reproductive Technology. Can we minimize bias and variability? 2013. MMWR Surveill Summ. Recommendations for practices Pediatrics. 2015;136(3):409–411 2015;64(11):1–25

Downloaded from www.aappublications.org/news by guest on September 28, 2021 6 MAZUR et al Surrogate Pregnancy After Prenatal Diagnosis of Spina Bifida Lynnette J. Mazur, Mary Kay Kisthardt, Helen H. Kim, Laura M. Rosas and John D. Lantos Pediatrics originally published online January 10, 2017;

Updated Information & including high resolution figures, can be found at: Services http://pediatrics.aappublications.org/content/early/2017/01/06/peds.2 016-2619 References This article cites 16 articles, 1 of which you can access for free at: http://pediatrics.aappublications.org/content/early/2017/01/06/peds.2 016-2619#BIBL Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Ethics/Bioethics http://www.aappublications.org/cgi/collection/ethics:bioethics_sub Fetus/Newborn Infant http://www.aappublications.org/cgi/collection/fetus:newborn_infant_ sub Birth Defects http://www.aappublications.org/cgi/collection/birth_defects_sub Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.aappublications.org/site/misc/Permissions.xhtml Reprints Information about ordering reprints can be found online: http://www.aappublications.org/site/misc/reprints.xhtml

Downloaded from www.aappublications.org/news by guest on September 28, 2021 Surrogate Pregnancy After Prenatal Diagnosis of Spina Bifida Lynnette J. Mazur, Mary Kay Kisthardt, Helen H. Kim, Laura M. Rosas and John D. Lantos Pediatrics originally published online January 10, 2017;

The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/early/2017/01/06/peds.2016-2619

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2017 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

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