Mom Urged Doctors to Pay Attention to Daughter's Symptoms. Months Later, She Was Diagnosed with Rare Disorder (Exclusive)

Cheyenne tells PEOPLE about her tireless journey to find answers for her daughter, Eden

• Cheyenne was experiencing a normal pregnancy last year when she learned her baby was measuring below the ideal fundal height

• When daughter Eden was born, Cheyenne was told her baby was healthy, but her instincts told her otherwise

• Cheyenne tells PEOPLE how listening to her "mom gut" helped her get answers for her baby girl
  

Cheyenne remembers that her pregnancy "started out normal," with the exception of some struggles with nausea.

"I lost about 15 percent of my body weight, but other than that, things seemed okay," she tells PEOPLE, "until around 32 weeks."

When Cheyenne went in for her 32-week appointment, she learned that her baby's fundal height was lagging.

"There’s a little wiggle room with fundal height, but my midwife sent me for a growth scan out of an abundance of caution. It took about three weeks to get in," Cheyenne shares, "and I immediately knew things were not right."

After a lengthy scan in which she wasn't allowed to see the screen, "I left knowing nothing," the mom recalls. "But my doctor called me on my way home and asked to see me at 8:00 a.m. the next day. He told me my baby was measuring small; her abdominal circumference was only measuring 28 weeks, though I was 35 weeks at the time."

Cheyenne was given a dose of steroids the following day for the intrauterine growth restriction (IUGR). That was followed by a nonstress test (NST), which "was fine," she adds. A biophysical profile (BPP) the next day was also normal. But monitoring continued.

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from juicy celebrity news to compelling human interest stories.

Related: Texas Woman Goes Viral for Giving Birth at 51, Says Pregnancy Was Planned After Meeting Husband Later in Life (Exclusive)

When Cheyenne's baby wasn't reactive at her 38-week visit, doctors sent her straight to the hospital to be induced.

"The weeks leading up to her delivery were full of anxiety for me," Cheyenne recalls. "I knew in my gut that something wasn’t normal, and no one could tell me what it was."

Thankfully, when it came time to welcome Eden last year, the delivery "was beautiful and perfect," she shares.

"I had the best team at Inova Fair Oaks," Cheyenne says of her delivery in Virginia. Eden "was born 5 lbs., 7 oz., which was just barely considered a low birth weight. She had low blood sugar and was given glucose but was otherwise fine."

After 24 hours, the family was released to go home with their baby girl. In the weeks that followed, there were little things Cheyenne would notice about Eden that sparked concern, but others were quick to reassure her that her daughter was fine.

"After a few months, I noticed that she was still very floppy and had no head control," Cheyenne shares. "This was the beginning of our journey. I knew at this point, in my mom gut, that my IUGR was related."

At her 4-month visit, they were referred to physical therapy to help Eden get stronger. "We had a CT of Eden’s head because of her macrocephaly (larger head) and an EEG for suspected seizures. Both came back clean. Additionally, we did a hip X-ray because she couldn't put weight on her legs. That was also clean," Cheyenne says.

Still, as the mom watched her baby grow, she knew something wasn't being explained. At 4 months, they got a hypotonia (decreased muscle tone) diagnosis, but Cheyenne persisted beyond that answer.

"People told me I needed to chill and that Eden was fine," Cheyenne says. "They told me well-meaning stories of their delayed children and told me to stop comparing Eden to my older daughter. I knew there was something more."

"It hurt me so deeply that so many people brushed me off and so few people helped carry the weight of this burden," she adds, "but I’m so thankful for the family, friends, and our physical therapist Allison for believing me and helping to carry our load."

Cheyenne continued to seek other opinions as she advocated for her daughter.

"In the early months of this year, we switched pediatricians and neurologists because Eden has regressed in her gross motor skills. On the Alberta Infant Motor Scale, Eden wasn’t (and still isn’t) on the chart after being in the 10th percentile earlier on. So, if you lined Eden up with 100 other babies her age, she wouldn’t even be close to any of them," she explains.

"We finally got an MRI and a referral to genetics. The MRI was normal," Cheyenne says. But a genetics appointment in May, in which Eden underwent whole genome sequencing, finally offered answers.

In July, Cheyenne learned Eden is living with 16p11.2 deletion syndrome. According to the National Organization for Rare Disorders, "People with 16p11.2 deletion syndrome usually have developmental delay and intellectual disability. Most also have at least some features of autism spectrum disorder. Some affected people have minor physical abnormalities; however, signs and symptoms vary."

Cheynne "was relieved to get a diagnosis," she says. "I actually got the results in the parking lot of a facility where I had just gotten Eden an assessment for Early Intervention and found out that Eden, at 15 months, was still only at a 6-month level in all domains of development. I debated running back in there and saying, 'Wait! Here is why!' " she says.

Sharing the news with others came with mixed feelings, however. "I think some of the people around us were sad and felt bad for us, but I was so happy to have an answer and to be affirmed in that way."

"Everything Eden has gone through — the big stuff like IUGR and global delays, and the small stuff, her small hands, head shape, digestive upset, etc. — can be attributed to 16p11.2 deletion syndrome," she notes. "With a diagnosis, we’ve been able to connect with other families with similar stories. It also allows us to access the care she needs and gives her therapists guidance on which avenues they take to best support her."

Cheyenne has opened up about her journey with Eden on TikTok, where she's also building a community with moms who have been through similar situations.

"I made a TikTok mostly to commemorate and share that I’m not crazy," she says. "I never thought it would get more than a million views and hundreds of comments from families with similar stories."

"I had no idea how hard I’d have to fight and advocate for my girl and I realize now that I’m not alone in having to do that," she continues. "There is a whole community of moms suffering in what feels like silence because providers and others around us don’t believe what we say when we express concerns about our children."

TikTok has also pointed Cheyenne to some helpful resources, like Simon's Searchlight and Unique through rarechromo.org.

"I’ve connected with other parents of children with the same deletion syndrome and it’s given them a voice to share their stories while giving me information on what our trajectory may be," she says. "We didn't get these resources from our doctors or insurance — we got them through TikTok! It’s amazing."

Cheyenne is hopeful other parents who have gut feelings like hers will continue fighting for their kids and "not be afraid of what others say or think."

"At the time, I worried I was being too 'extra' or that I was being annoying. It is okay to get second and third opinions and if a provider thinks you’re being annoying, then they’re not the right fit for your family anyway," she shares.

"Additionally, if you worry about being a good mom, you’re probably already a good mom. I spent months worrying about whether or not this was my fault. Did I take too many nausea medications? Is it because I hold her too much? Turns out, this had nothing to do with me."

Today, Eden is 16 months old and enjoying fun milestones that the family appreciates now more than ever, as they continue close and careful monitoring.

"In some ways, having a child that is so delayed has felt like I’ve been given the gift of a young baby for triple the amount of time," Cheyenne says. "She’ll continue with feeding, speech and physical therapy to help guide her. We’ll keep an eye out for hearing, cardiovascular and spinal issues that can be common with this syndrome."

On the sweeter side, though, "She has just started to show love by hugging," Cheyenne shares. "She hugs me and her stuffed toys. She is also finally sitting and scooting, so it’s been fun to watch her have the ability to be more mobile and interact with her sister."

For more People news, make sure to sign up for our newsletter!

Read the original article on People.