A woman born 20 years ago to save her sister's life spoke recently about her life and her feelings about being a "savior child". Since 1991 public opinion has shifted in favor of creating a life to save an existing one. The legal landscape, which does not yet prohibit this, may also be shifting in ways that might still affect it.
Several states have adopted or are considering laws banning so-called sex- and gender-selection abortions. Presumably these laws apply only to in utero abortions and not to the discarding of unused embryos created for savior siblings. Nevertheless states continue to tinker with the legal definition of human life as it relates to abortion law. This could affect the savior sibling concept in the future.
The married couple found themselves desperate for a baby. Even though the doctor told them a pregnancy would put mother and baby at risk for severe problems, and their friends and family warned against it, they pushed all fears aside. A year later, a baby arrived and brought the hope of life to his big sister.
Savior Siblings Offer Hope
A recent book, "The Match: Savior Siblings and One Family's Battle to Heal Their Daughter", tells about one couple's decision to have a baby in the hope of saving the life of their two-year old daughter.
Stacy and Steve Trebing used pre-implantation genetic diagnosis (PGD) and in vitro fertilization (IVF) to conceive a baby. Their infant son was to be the "savior sibling" for their two year old daughter born with a rare disease known as diamond blackfan anemia.
Obviously, the decision to have a child to save another is incredibly difficult and not one taken lightly and the knowledge later on that you were born just to save your brother or sister's life can be hurtful.
Other issues involve the actual procedure needed to make sure the new child will benefit the sick child. The greatest unknown is if there's harm to the fetus during PGD. During this process, a cell is pulled off the embryo testing its genetic makeup to make sure it matches the child in need. But to parents desperate to heal their child, it may be a risk they're willing to accept.
Legal Risks Addressed
Any doctors, clinics or hospitals involved in the process make sure you understand and accept the risks. If you're thinking about such steps you'll sign a number of forms spelling out your understanding of the risks and what you (and your spouse) want done with any extra embryos and who would get them in a divorce, or if he or she could use them in case of your death.
Any medical procedure is risky and the risks and your rights are carefully detailed before any procedure. However, even signing these waiver forms don't completely sign away your legal right to sue.
But in the case of IVF, if the procedure doesn't work, or if no pregnancy occurs (or a miscarriage happens), the parents probably don't have a good chance of winning a lawsuit.
Rights of the Savior Child
Jodie Picoult's novel (fiction), "My Sister's Keeper" that was made into a movie in 2009, tells of a couple who had another baby to donate bone marrow, blood and eventually a kidney to her older sister due to renal failure. When the younger daughter turns 13, she enlists the help of a lawyer to sue her parents "for the rights to her own body" and to make her own decisions about helping her sister.
There have also been some real legal cases discussing savior siblings in the United Kingdom. They had the first "test-tube" baby, Louise Brown and are more prepared for the many issues that appear during new reproductive technologies. They also have a Human Fertilization and Embryology Authority (HFEA) to regulate, inspect and license fertility clinics and doctors, and sets guidelines for the different types of procedures available to families.
The US is less regulated when it comes to the many forms of Assisted Reproductive Technology (ART) available, although there are several legal cases because these procedures are becoming more widespread. For the moment, it's more about the ethics about choosing a boy or a girl, or "designing" a baby to meet your expectations. Would you be able to sue if you designed an extremely smart child, but she couldn't even spell?
Only time will tell whether the risk of complications to go through ART outweigh the successes and the effects on the children will have.
In all cases, however, be ready and have essential legal documents prepared so your children are protected if you're unable to care for them for some reason. A will naming a guardian and powers of attorney are must-have documents to guide your family through a crisis.
Questions for Your Attorney
- What type of documents to I need to have made and sign if I want to have a "savior" child for my current child?
- My doctor assured me my child would be a perfect match for my child with a health problem but isn't. Can I sue the clinic and/or doctor?
- Can I be sued by my child when they find out the reason for their birth?