When April Cannon and her husband, Ryan, lost their newborn, Annabelle, to the genetic disease spinal muscular atrophy in 2013, they felt they’d been plunged into an unknowable darkness.
As parents of a healthy 2-year old daughter, Makayla, they had no reason to suspect a problem. “We’d never heard of SMA,” April says. “We had no idea we were both carriers of the disease.”
With the knowledge that they had a 1 in 4 chance of having another child with SMA, they made a heartbreaking mutual decision to “close the door on genetic children.” Yet they felt their family was not complete. Alongside the despair of losing her child, April says, she felt “these little sparks of trust and hope.”
The Cannons weren’t certain that a traditional adoption was the right choice. They worried about how the uncertainty and sudden change might affect Makayla, who had been so eagerly anticipating her baby sister. The costs of in vitro fertilization using donor sperm and eggs were very high, and this process didn’t seem to be a good fit for their family. On the advice of a friend, the Cannons looked into embryo adoption.
Though embryo adoption has been available since 1997, it is not as widely known as IVF and surrogacy. According to Dr. Jane Frederick of HRC Fertility in Newport Beach, there are more than 400,000 frozen embryos in the United States. While the majority of these embryos are targeted for patient use, the fate of the remaining embryos is uncertain. Only about 2 percent of patients choose to donate their embryos to another person or family.
“Before we begin to create embryos for use in IVF,” Frederick says, “I want my patients to be aware of the options.”
Frederick explains that remaining cell tissue can be donated to research such as the stem cell studies on diabetes at UC Irvine. It can be donated to another person or family, or it may be thawed and discarded. Most often, she explains, people avoid making a choice and leave their embryos in the freezer.
“For a lot of people,” Frederick says, “it’s hard to let go.”
Though she has matched embryo donors with recipients at the clinic, Frederick will most often recommend that patients interested in embryo adoption go through an agency. April and Ryan Cannon went to Snowflakes Embryo Adoption, a branch of Nightlight Christian Adoption. As a pro-life organization, its mission is to place every embryo, but Marketing and Program Director Kimberly Tyson says that only about 10 percent to 20 percent of families are intent upon rescue. They’ll say, “We want to adopt your hardest-to-match embryos – those frozen the longest, or with three generations of bad medical history.” Most people just want a healthy child and are looking for a good way to “fill their arms.” The total cost for a Snowflake Adoption is $8,000, versus an IVF round that starts at upward of $12,000.
Tyson says more than 500 babies have been born as a result of Snowflake Adoption, and the very first “Snowflake baby” just turned 18. Tyson explains that families have adopted embryos that have been frozen longer than they’ve been married and that a current family is pregnant with an embryo that has been frozen for 21 years. The Snowflake Adoption contract specifies that no genetic testing will be done on the tissue prior to implantation, ensuring that all embryos have the best chance of being carried to term, no matter their genetic makeup.
Though she’s seen success with long-frozen embryos, Frederick is quick to point out that freezer burn affects any tissue. Successful embryos are those that have been created with strong eggs (usually from women under 35) and have been quick-frozen using a process known as vitrification.
For April Cannon, embryo adoption seems to occur at an intersection of faith and science, with the opportunity to “save” a Snowflake Baby, balancing the idea that “God has given us the brains to become scientists and doctors.”
The Cannons made their decision to work with Snowflake Adoption in stages. The mandated screening process, which includes background checks, counseling, written recommendations, health screenings, reading requirements and a home visit with a social worker, provided ample time for the Cannons to thoroughly examine their choice.
“It’s hard to give up genetics,” April says, “but I felt like my child was waiting.”
Perhaps the hardest part was letting go of genetic testing on the embryos.
“I had anxiety to the max,” April says.
After an honest discussion with the social worker about their unwillingness to take any known risks, the match was made taking their experience with SMA into full account. Though they don’t test the embryo itself, Snowflake does provide a three-generation medical history of the donor family.
At the outset, April had been adamant that she’d want a closed adoption, but once they started reading more about the process, she quickly realized she was acting out of consideration for her own comfort. When she thought about the questions her child might one day ask, she reconsidered.
“Maybe he won’t care,” she says, “but maybe he will. It’s my desire to raise an individual, not just to have a baby.”
Correspondence between the Cannons and the donor family was maintained during the pregnancy by Snowflake, but after the birth of Corinth Cannon, the families have had direct communication. They’ve exchanged letters, photos and Christmas ornaments.
“We could meet up if we wanted,” April says. After taking control of her personal narrative, she’s determined that letting her child tell his own story is the most important thing.
“God’s will didn’t line up with what was in our hearts,” she says. “But there is so much grace in the idea that we can do more than what our bodies might naturally do.”
