Mom Finds Out Baby She's Carrying Has Fatal Diagnosis Halfway Through Pregnancy: 'Most Beautiful, Painful Experience' (Exclusive)

"It’s been the most beautiful and the most painful experience I’ve ever gone through in my life," Madysen Wilcox tells PEOPLE

• Madysen Wilcox gained a following on TikTok for documenting her recent pregnancy

• After some minor complications early on, she learned her son-to-be had a rare, fatal condition of the brain

• Wilcox opens up to PEOPLE about the beauty and pain of her pregnancy

Madysen Wilcox, 29, was just six weeks pregnant when she began having complications, including bleeding and spotting that her doctors initially suspected may be a sign of miscarriage.

"However, when we got our ultrasound, they discovered I had what was called a subchorionic hematoma," Wilcox, of Utah, tells PEOPLE in an exclusive interview. According to the Cleveland Clinic, it is a condition in which "blood forms between a baby's amniotic sac and the uterine wall."

While it can be threatening to pregnancy depending on the location and size of the hematoma, doctors said Wilcox's "was small and in a spot that wasn't concerning." So they recommended pelvic rest, telling her to pause exercising and refrain from staying on her feet for long periods of time, or lifting anything heavier than 10 pounds.

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"I did that for two weeks and my hematoma resolved and everything seemed fine," Wilcox says.

Once she entered her second trimester, the spotting began again.

"I was 15 weeks pregnant and my midwife wanted to do an ultrasound to figure out if the spotting was due to the hematoma or if there were issues with my placenta," she says. "So they checked again and found another subchorionic hematoma — but this time they also found that the baby's brain was not properly forming and they had a hard time locating a nasal bone."

Doctors then advised Wilcox to undergo a genetic blood test screening and a more in-depth ultrasound, suspecting that her baby might have Down syndrome. The blood test came back negative for any genetic disorder, but Wilcox's midwife still wanted a second opinion from a specialist based on her ultrasound images.

At 18 weeks pregnant, on May 29, 2024, Wilcox learned that her unborn baby — a boy she and her husband Darin had already named Charlie — had Alobar Holoprosencephaly, a rare condition in which the brain does not separate into two hemispheres.

The condition, she learned, is fatal.

"The outcomes that doctors [gave] us are very grim," Wilcox says, noting that she saw four separate doctors after receiving the diagnosis. While each physician offered a somewhat different answer when asked about exact life expectancy, they all offered the same outlook: Charlie would not live long, and had a high likelihood of not even making it to birth.

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However, Wilcox and Charlie defied some of the odds. "Most babies with this condition end in a miscarriage before the second trimester," she says. "Those who survive the first trimester, do not live past 24 weeks gestation."

But at 34 weeks pregnant, Charlie's heartbeat remained strong.

As she explains to PEOPLE, Wilcox was told that only one out of 10,000 pregnancies with Alobar Holoprosencephaly make it to a live birth, but she remained optimistic, sharing details of the condition, and her pregnancy, on TikTok.

She also made an effort to speak about Charlie as much as she could throughout her pregnancy, both with her husband and their two other children.

"Carrying a baby with a terminal diagnosis is an emotional roller coaster to say the least," she says. "I call it emotional chaos. It's a mixture of love, gratitude, compassion, joy, grief, fear, despair, guilt, and apathy, all at once. In the same day I can feel all of these emotions ten times over."

Though she adds, "I love this baby more than life," she admits "it’s also painful to get attached, because once I do, the grief and despair set in."

As the couple got closer to delivery day, they met with their doctors to plan how best to handle Charlie’s arrival, making "plans for every possible scenario," Wilcox says.

While Wilcox's due date was Oct. 27, doctors had planned to induce her on Oct. 4, just one day shy of a full-term pregnancy.

But on Oct. 4, the hospital was too full to accommodate her inducement — and she gave birth on Oct. 5 as she had hoped.

Ahead of his due date, Wilcox's plan was to "cherish the little time we get with our son, just getting to know him and holding him in our arms, where he is warm and knows he is loved," she shares.

In the end, they got to do just that. In a video posted to TikTok, Wilcox explained that Charlie "made his debut on the morning of October 5, 2024. We spent 41 beautiful minutes with him until he peacefully passed in our arms. Charlie's life was brief but perfect ... he only knew love and the warmth of his parents' arms."

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For Wilcox, the moments she spent with Charlie were life-changing.

"It’s been the most beautiful and the most painful experience I’ve ever gone through in my life," she tells PEOPLE. "It’s hard to prepare to say goodbye to a person you’ve never met, but that you've also carried for nine months."

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