The Second Article in a Series

By Shawna Feely, MS, CGC, and Carly Siskind, MS, LCGC

In the first article we presented options that people with CMT have to become biological parents without passing CMT on to their children. These options, such as prenatal testing or preimplantation genetic diagnosis (PGD), can be a good choice for some, but they are not for everyone. Some people considering family planning may not be able to utilize these options because their genetic cause for the type of CMT is unknown. Others may find some of these options cost prohibitive or they may have concerns about ethical issues raised with these choices. For these individuals, having alternative options for family planning is necessary and is more important than having children that are related genetically. In these situations, options such as adoption or using donors can be the means to start their own family.


Traditional infant or child adoption has been a long-standing option for many people searching for an alternative way to build a family. There are many different types of adoption, which differ based on where the child is from (domestic or international), how the child is found (using an agency or through a private source), and whether or not there would be a continued relationship of some kind with the biological parents (open or closed adoption). It is important for a family considering adoption to do the research and identify all of the pros and cons for each of these choices.

It is also important to know that things like the age of the child, location, and source can all impact the overall costs and fees that are associated with the adoption process. Although there are grants and sliding scales that are available depending on the type of adoption, the overall cost associated with this process can quickly add up when including fees, legal representation, travel costs, etc., resulting in expenditures that often range from $10,000 to $40,000. There are a lot of agency websites that can be found online, but the best place to start research on the adoption process is through national organizations such as the National Adoption Center ( or AdoptUSKids ( [adopting foster children]).

Embryo adoption is a relatively new method of adoption in which the adopting parents get to be involved from the start of pregnancy. With embryo adoption, couples who have created embryos using in-vitro fertilization (IVF) donate embryos to the adopting parents. The embryo is then implanted in the uterus of the adoptive mother in the hope that she will become pregnant and ultimately give birth. Because the embryos are donated from couples who no longer wish to use them, the cost of embryo adoption can be much lower than alternatives, such as using egg donation, in which the donor woman typically gets paid (see below). However, there are still costs associated with the transfer of the embryo to the adopting mother and agency fees.

Depending on state and agency regulations, people considering embryo adoption may still have to go through a homestudy, just like traditional adoptive parents do, which can also add fees to the process. A homestudy is the process of assessing a family’s suitability to adopt a child or embryo by ensuring that the child’s needs would be met by that family and that they are prepared for the adoption process. With homestudy fees and procedure fees, the average cost for embryo adoption is$10,000 to $15,000, and this does not ensure a successful pregnancy. As with all of these options, it is important to do thorough research and weigh all the pros and cons. A good place to start is the Embryo Adoption Awareness Center (


For men who have CMT and are considering family planning options, using donor sperm is an option. There are a variety of ways to both obtain donor sperm and to use it for insemination. The most common process is to start with a reputable sperm bank that allows couples to review the histories of possible sperm donors and make selections based on characteristics such as physical descriptions, ethnicity, age, career, education, personal interests, and personality traits. Typically, sperm banks are helpful and safe to use as they will run routine screening for things like STDs and genetic conditions that are common in the population. Reputable sperm banks will also monitor how many people use a particular donor within a certain population, and they may even keep track of successful pregnancies to ensure that the donated sperm is successful in yielding a pregnancy as well as identifying possible genetic conditions.

Some people opt for using private donors, like family members or close friends. These are not necessarily screened as thoroughly as sperm bank donations, but they allow for a closer relationship with the donor, or, if a family member is used, a genetic relationship within the family will be maintained. In general, the process of using sperm donation and insemination can cost up to $1,000, depending on a variety of factors including where the sperm is obtained and whether the insemination process is achieved at home or in a doctor’s office with assistance.

For women who have CMT and are considering family planning options, using egg donation is a possibility. Similar to sperm banks, there are facilities that can help link willing donors to couples, and donor selections can be made based on characteristics such as physical descriptions, ethnicity, age, career, education, personal interests, and personality traits. The woman who is providing the egg, however, goes through a more complex process than men go through to donate sperm. To donate eggs, women must have a series of hormone injections in order to produce more than one egg at a time, and outpatient surgery is required in order to harvest the eggs. Because this process is more involved and more invasive than sperm donation, the financial compensation is higher, costing from $15,000 to $50,000. As with sperm donation, it is possible to use a friend or family member as the egg donor.

It is important to remember to research the pros and cons thoroughly before making any decision in order to select an option that is right for you and your family. A genetic counselor in your area may be able to help you get started or guide you through the process ( [Find a Genetic Counselor]). Whether it is through prenatal testing, PGD, adoption, using donors, or the old fashioned way, having children and building a family is every person’s right, and no one should tell you not to have children just because you or your partner have CMT. We hope these options have provided possibilities to families who would like to have children, but who do not want to pass on CMT.