Identical ‘Mirror’ Twin Decides To Be Sister’s Surrogate Despite Rare Syndrome

Chicagoan Amy Fuggiti, 36, has been struggling with in vitro fertilization but her identical twin sister, Courtney Essenpreis, decided to give her a gift she will remember forever.

After four failed rounds of IVF, Essenpreis decided to be her twin sister’s surrogate.

“I didn’t even have to ask her to be our surrogate,” Fuggiti told the New York Post. “We’re so intrinsically tied, it felt like something that was supposed to happen.”

Fuggiti and Essenpreis are what’s known as mirror twins.

This means the two have matching freckles on the opposite sides of their faces; and whereas one is right-handed, the other is left-handed. In addition, they both have the chromosomal disorder Axenfeld-Rieger syndrome, which involves the eyes, ears, and central nervous system, according to raredisease.org.

“In this condition, the front of the iris may be entirely lacking or may be only partially present,” the website states. “The eye muscles may be absent or only partially available.”

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Both of the sisters were also diagnosed with glaucoma — which impacts their eyesight and can cause heart abnormalities.

There’s a 50% chance that the condition can be passed on genetically.

So when Fuggiti attempted IVF, she used a process known as pre-implantation genetic testing for monogenic/single gene defects. To translate, that means that all of the embryos are screened in a lab for Axenfeld-Rieger syndrome and only those that don’t show signs of the disorder are used — but even still, she had trouble getting pregnant.

“Doctors were stumped at my case. The uterus looked good, the embryos had undergone chromosomal testing, and we had no real reason why it wasn’t working,” she explained.

She attempted four times to get pregnant through IVF, and either the embryo failed genetic testing or it didn’t implant after the transfer.

“I’ve lost count of the number of retrievals I’ve had,” she told the New York Post. “It was disappointment after disappointment.” But in July, she and her husband finally had their “golden embryo.”

So they decided to try something different. As Essenpreis had previously used IVF and PMT three times to safely deliver two babies, it seemed like a no-brainer for her to get involved in the process.

“There wasn’t really a specific moment, nor did I ever ask her officially, to be my surrogate,” Fuggiti shares. “It sort of made sense in the confusion of infertility.”

And in February of 2020 — both Fuggiti and Essenpreis held hands as the embyo was transferred but they were still nervous.

“We didn’t want to get our hopes up too much after all the disappointments,” Fuggiti explained.

And then they got pregnant. But she believes the baby “belongs” to all three of them.

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“When I say ‘We’re pregnant,’ I mean myself, my husband and my sister,” Fuggiti said. “It’s a beautiful celebration of life, because all three of us did this together.”

Essenpreis is due in October, and the two sisters were overwhelmed with joy to go through the process together. They even detailed their story in an episode of the podcast Pregnantish as well as their Instagram page.

“We wanted to share our story to help spread awareness about modern family building,” Fuggiti shared. “Infertility is a topic so often not discussed when it affects so many men and women.”

They hope that in sharing their story, they can encourage employers to look into fertility coverage as well as elevate their benefits.

“Without my husband’s employer, Beam Suntory, adding surrogacy coverage to their policy last year, this may not have been possible,” the mom admits.

“The process of IVF is incredibly difficult. There are such high highs and low lows that having a good support system becomes intangible,” she explains. “The joy of having my sister by my side the entire way, and now carrying us all to the finish line is something I can’t even begin to describe.

“It’s also something that just so simply makes sense — we shared a uterus so long ago it seems fitting it once again ties us to life.”