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The decision to have a baby can be a life-changing experience and one that should bring joy. However for those who are either at risk of HD, or are gene positive, planning for a family can start difficult conversations about the risk of passing on the faulty gene to future generations. For some individuals and couples, the risk is too great and they make the heartbreaking decision not to have biological children of their own.
However, whatever decision you make, it needs to be right for you. It is important to know that you do have choices and options available to you. Some of which are outlined below:
IVF- Pre-Implantation Genetic Diagnosis (IVF-PGD)
PGD is the process where a couple can choose to try and conceive a baby via IVF and check whether the embryo carries the faulty gene for HD prior to implanting it into the woman’s uterus. They do this by removing some cells and testing these for the HD gene. Only embryo’s that are free from the faulty gene will then be implanted. This is an additional step to IVF that many people who have fertility difficulties do not undertake. Medical rebate is now available for some genetic conditions including Huntington's disease. Please contact Medicare and/or your Private health insurance for specific information.
Prenatal Diagnosis
Involves testing a pregnancy that has been conceived naturally to determine whether the baby has inherited the faulty HD gene. The earliest stage of pregnancy that this testing can be done is around 11 weeks of gestation. These tests can cause a miscarriage in a small number of women. This gives parents information about whether the baby has inherited the faulty HD gene or not. Generally, if a couple go down this avenue it is because they have made the decision to terminate the pregnancy should the baby be gene positive to HD.
Donor Sperm/Egg
By utilising a donor egg or sperm, you remove the risk of your baby inheriting the faulty gene. However this also means that for one parent they will not be biologically related to the child.
Foster care/Permanent Care
You can make a big impact on the lives of young Australian’s by providing a safe and nurturing home to children who cannot live with their biological parents. Foster care is a short term placement until the child is returned to their biological parents, whereas permanent care are for those children who cannot be returned to their parents. A permanent care order is granted by the courts giving legal custody and guardianship to the permanent family, until the child turns 18yrs of age in which the order expires.
Adoption
Adoption provides an avenue for families who would like to have a family without the risk of passing on the faulty gene for HD. In this instance both parents would not be biologically related to the child. Each State and Territory have differing laws and requirements when it comes to adoption. It is advised that you seek further information relevant to the state you live in.
Inter-country adoption is another possibility, however each country Australia has an adoption program with, also has their own processes and requirements. It is advisable to seek further information from intercountry adoption australia