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Erin’s Story

Spring 2019 Horizon Article

Family Planning with HD: Adoption

By Tiffany Spencer

When Erin and her husband were 31 years old they decided to start a family. Shortly after sharing the exciting news with her parents they were told something unexpected. There was speculation that her grandmother might have had Huntington disease (HD), meaning that Erin may be at-risk for having the disease herself.

A short eight months after learning about the possibility of HD running in her family, Erin found out through genetic testing that she was gene positive.

Despite this devastating news, Erin and her husband were still determined to start their family. After one year of trying to naturally conceive, the couple spent two and a half years trying assisted reproductive technologies including In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). None of the options the couple tried worked, and Erin was suffering from undiagnosed infertility.

After taking a year off to consider their options, the couple decided to try adoption. Erin’s biggest fear was that they would get turned down because of her gene positive status. But she knew the only thing they could do was try.

They decided to try private adoption in Ontario. Private adoptions are when birth parents choose a couple to become the parents of their child. Potential adoptive parents create a life profile book about themselves. They can make a connection with birth parents through word of mouth or an adoption lawyer. Applicants must register with individual lawyers who hold on to a copy of their life-books. The books are shown to birth parents looking to make an adoption plan for their child.

As with any adoption, there are various other steps the couple must complete. This includes parenting classes (PRIDE training) and a home study which includes interviews with a social worker, home visits and the submission of finances. These steps are to ensure they are adequately prepared for the parenting roles.

Almost 6 years after they decided to start a family, Erin and her husband received a call. A baby had been born the day before and they were chosen to be her parents!

“After such a long, exhausting journey, it all happened so quickly,” says Erin.

They were able to bring their new baby home when she was just ten days old.

“The process is intense,” says Erin. “But it was worth it.”

For couples affected by HD who are considering starting a family, Erin recommends talking to your partner and trying not to let other peoples opinions get in the way.

“You and your partner are the only ones who can make this decision,” Erin emphasizes. “Everyone will bombard you with their suggestions but all that matters is that you are both comfortable with what you decide to do.”

She also encourages parents affected by HD to have the difficult conversation with their children early, so they have time to process their status before making important life decisions.

Further Family Planning Information
by Erin Paterson

When you have HD in your family, figuring out how to have children can be a challenging decision. My path towards parenthood took many twists and turns. First my husband and I tried to conceive naturally for over one year. When that didn’t work, we turned to assisted reproductive treatments. Unfortunately we were suffering from infertility, which eventually led us to try adoption. No matter which option you decide to pursue – natural conception, IVF with PGD or adoption – here are a few things to consider.

Conceiving Naturally

It’s your choice. Friends and family might have an opinion on how you should conceive. After taking everyone’s advice into consideration, it’s important to make the decision that is best for you and your partner.

Not everyone makes the same choices.You have put lots of thought and consideration into your decision to start a family, as have others. Everyone’s circumstances are different. Their choices don’t make yours any less valid.

Talk to someone. Even after making the decision to conceive naturally, it can still feel scary. Talking to an HD counsellor or someone who has gone through the same thing can be very helpful. It is always good to know you are not alone.

IVF with PGD

Plan in advance.Going through in-vitro fertilization (IVF) involves lots of early mornings and doctor appointments. It is a big time commitment. Preparing in advance can help ease related stress. Have some pre-made meals in the freezer, get that pile of laundry put away, take care of any nagging tasks. The less you have to worry about, the better. Then you can focus on taking care of yourself and your partner as you go through the process.

Tell people what you need. You may have told close friends and family that you will be doing a fertility treatment. Think about what kind of support you want from them. You might like them to text you every day to check in, or to take you for coffee to talk about things. Maybe you need to be left alone; that is okay too. Either way let them know the best way they can support you. They care about you and want to help.

Know it can be emotional. Whether because of the big decision you made to do IVF with PGD, or from the fertility medications that can make some women emotional, going through the process can be an emotional roller coaster.

Remember, waiting can be hard.Whether it’s for your next doctor’s appointment, to find out how many eggs you produced, or for the results of your PGD, a round of IVF involves a lot of waiting. Many couples find the two weeks between having an embryo transfer and waiting for their pregnancy test results to be particularly challenging. It can be helpful to plan something you’ll look forward to. Dinner out with friends, starting a new book, or binge watching a show on Netflix–whatever makes you happy. Sometimes fertility treatments can feel all-encompassing, and it can be good to get your mind off of it as you wait.

When Considering Adoption

It is possible. When we were considering adoption, we couldn’t find an answer to our most pressing question. Will my gene status affect my ability to adopt? The only thing we could do was go ahead and try. We were fortunate enough to be chosen to be the parents of a newborn baby girl. Navigating the process was a little tricky, but it is possible to adopt with HD in your background.

Be prepared to talk about HD. As part of the adoption process, you will be interviewed by an adoption practitioner. They delve into every aspect of your life and chances are HD will come up in the discussions. Prepare yourself by rehearsing your answers ahead of time. They might ask questions such as, what is HD?  What is your parent’s prognosis? Have you been genetically tested? What are your test results? When are you expected to get HD? What supports will you have in place for your children if you start having symptoms? This is your opportunity to educate the practitioner about HD. Always stick to the facts.

Speak positively. No matter what you are asked, it is important to speak about HD in a positive manner. Don’t give the practitioner anything to worry about. Show them you have things under control, and that HD will not have an impact on your ability to be amazing parents. Treat it like a job interview and present your best self.

No matter which path you choose to create your family, know that you are making the decision that is right for you and your partner. If at some point you change your mind and try something else, that is okay too.

Wishing you all the best on your journey towards parenthood.

Erin Paterson tested gene positive for HD and went on to create her family through adoption. She is currently writing a memoir about HD and her path to parenthood. If you have any questions about trying to conceive, IVF or adoption, she would be happy to hear from you. Email her at or visit her website at

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