Mom Reveals the Heartbreaking Reason Why She Only Takes Her 4-Year-Old to the Park at Night (Exclusive)

• Molly and her husband were surprised to learn their third baby would be born with congenital diaphragmatic hernia (CDH)

• Their son, Mikey, has made it through a number of setbacks to achieve milestones that the family was told he never would

• Molly tells PEOPLE about managing her family of five's life with public reactions to Mikey and a lack of understanding about CDH

A mom whose little boy is living with a rare condition hopes that sharing the highs and lows of their story can help create a more compassionate world.

Molly, on TikTok @mommamolly_, tells PEOPLE that she wasn't expecting anything out of the ordinary with her third pregnancy. It was halfway through when she was delivered heartbreaking news.

"We were pregnant during the height of COVID. We found out right at the beginning. Spouses couldn't go with you to doctor's appointments. I was supposed to be finding out the gender, all by myself at 21 weeks. And the woman stops what she's doing and went to go get the doctor," Molly tells PEOPLE.

"The doctor doesn't say anything but they say I have to go to his office. He hands me a piece of paper and says, 'This is what your son has. It's called congenital diaphragmatic hernia (CDH). It's serious and it's rare.' He tells me his chance of survival is none."

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The doctor moved forward with preparing Molly to terminate the pregnancy. As she called her husband from her car, completely distraught, he held out hope.

"The drive home from my house is about a 10-minute drive. It took me four hours to get home. I couldn't drive. I couldn't move. I was just crying," she recalls. "I got home and my husband looked at me and said, 'We're going to figure this out. We're not losing him. There's got to be a way.' "

In their research, the couple discovered Dr. David William Kays, the medical director of the Center for Congenital Diaphragmatic Hernia (CDH) at Johns Hopkins All Children's Hospital. They made an appointment the following week and learned that by Dr. Kays' assessment, their baby actually had a 95% chance of survival.

With a completely different prognosis, they moved forward with the pregnancy. One month before delivery, different markers started to come up to indicate there may be something more going on, but the family was focused on the CDH diagnosis.

"We had a month left until Mikey was born. We had to go from Palm Beach and temporarily relocate to St. Petersburg because they wanted us closer. We had a scheduled induction for Mikey. My parents came to take care of my 8- and 9-year-old girls while we went to the hospital. I had two regular deliveries with the girls. I didn't think anything of it," Molly recalls.

"Labor and delivery were horrific. I declined quickly after I had epidural. They ended up trying to give me another epidural after another epidural. I'm like, 'I'm still in pain. There's still something wrong.' They wanted to give me more epidurals after I already had several. My husband looked at them and goes, 'No, we need to do a C-section.' They wanted to wait for the new doctor to come in because there was about to be a shift change, and I just looked at my husband. He tells them, 'We're having a C-section because there's something seriously wrong with my wife.' "

Molly learned that Mikey was stuck to her pelvic bone, but they were able to get him out before he was whisked away.

"Mikey was not breathing at birth. They intubated him and took him to a specialized unit for CDH babies and kids that's right next door to the hospital," Molly shares.

"My husband waited until I was good to go to Mikey. I didn't see him until that night. I refused pain medication so that I could go see him," she says. "It was a wonderful unit, he had good people watching him. He did well for the first few days and on the third day, he ended up getting his lung punctured and needed an emergency ECMO." ECMO, or extracorporeal membrane oxygenation, is a type of life support in which blood is pumped outside of the body to a heart-lung machine, per the Mayo Clinic.

The horrifying moment scared Molly and her husband, who were on their way home to tell their daughters about their baby brother.

"We were at home after just getting released, telling our girls that Mikey's doing wonderful and everything's great. Then we get this phone call that Mikey is unresponsive. He was unresponsive for around 20 minutes," she says. "Mikey was on the highest level of life support for 26 days. It was five weeks until I was able to hold Mikey."

Although difficult to endure, the hospital visit brought more potential answers for the family.

"While on ECMO, they ran genetics. I looked at a piece of paper and it said Pfeiffer syndrome. I remembered it from the list of syndromes. And that's how I found out Mikey has Pfeiffer syndrome."

Per Boston Children's Hospital, Pfeiffer syndrome is "a complex genetic disorder in which certain bones in the skull fuse early in their development."

Molly and her husband spent time at a program where they learned how to care for Mikey's different needs, which felt manageable in some instances and entirely overwhelming in others.

"The first day, we learned about the G-tube and the second, we did rounds with them. And then we looked at them and go, 'We can't take him home.' It was devastating because we were being told we're going to go home for Christmas and everything's going to be great, but in our gut, we knew there was something more wrong and taking him home would be a bad decision. It was one of the hardest decisions we ever had to make."

"Mikey had tongue and lip adhesion done to give him a clear airway," Molly shares. "They did the skull surgery, opening up the back of his skull where it was fused together. But there were still airway issues, so he was intubated again. He kept failing at thriving. They told us, 'That might be Mikey's baseline.' And we were like, 'No there's still something wrong.' "

By February, they came to the decision to move forward with a tracheostomy.

"We went through a month of testing and learning," Molly recalls. "I needed to get Mikey out of the hospital and get him home and better. I was also homeschooling the girls at the time, so it was a long six months. On March 26, Mikey finally came home. It was a long drive home and the hardest time of our life, but we made it."

Mikey is now 4 years old and has exceeded expectations in so many areas, making his parents exceedingly proud.

"We've gone through four years of doing it all on our own. I've never had help. I've never had nursing. I've done a lot of therapy on my own. We've built things in our house to help him with walking therapy," Molly says.

"They told us he was never going to walk because of the ECMO. We were told he may never eat by mouth. We were told he may never talk. My husband and I, we just push. I don't sleep very much. My husband doesn't sleep very much. We do whatever it takes for Mikey," Molly says. "We've gone all over the place and even though it's hard and I'm exhausted, my son is walking. He's running. He's giggling. He's eating. He's doing all these things we were told there was a slim chance, and in some cases no chance, of happening. I mean, we were told he wouldn't even survive birth, and here he is."

There have been some setbacks, however. "It's been scary and hard. I feel alone sometimes," Molly says. "No one understands the trauma that we go through, the PTSD that we go through. Three times in one year, Mikey woke up, not not able to breathe."

One week before Christmas 2024, Mikey had what his parents thought was a cold. Molly prepared to give him a breathing treatment and when she turned around, her son was blue.

"I get him on the pulse-ox and his O2 was low, his heart rate was low. Something was wrong, so we hurried to get him on his ventilator and called 9-1-1," she says.

"He started having a seizure. Only one side of his body was moving, but he was not responsive and there was bubbling out of his mouth. Mikey wasn't there," she emotionally recalls. "We got oxygen on him and then they come and get him to the hospital. He had two more seizures."

With anti-seizure medication now, however, Mikey is "doing great."

"It's been a huge change. He's eating more by mouth and trying to talk more. He's got more energy and put on 3 lbs., which is huge for him," Molly says.

Molly wants to give Mikey as many opportunities as possible. Still, she admits it can be daunting hauling medical equipment when trying to go out and do activities other families take for granted. Not to mention the social stresses.

"I was afraid to take him out to do 'normal' things," she shares of one moment. "I wanted to just take my son to the park right across the street from my house. It's walking distance and it was beautiful out. Mikey was just learning how to stand, so I take him to the park."

"We get there and there's a lady with a little boy, maybe 5 or 6, and he keeps staring at Mikey as he's playing. He started screaming and screaming and his mom was on the phone and she seemed almost annoyed to have to handle it. She goes to her son and then she comes up to me and she's like, 'Listen, my son is afraid of your son. Is there a chance that you can leave? Because he's really afraid, but he needs to play.' "

Molly quickly put Mikey in her stroller, staring down the woman as she loaded him up and walked away. Minutes later, she broke down.

"I walked a couple of feet away and bawled my eyes out. I called one of my friends and told her what happened and she said I should go back and have Mikey play, but I couldn't do it. It took us a while to go back to parks again," Molly says.

"But it's when we go anywhere, the stares, the 'What's wrong with that kid?' or 'It's a monster.' We don't get children wanting to play with Mikey. It's very rare. We go to stores or a park and we'll clear the whole place because instead of parents teaching their children the right thing, they avoid Mikey. It's so sad because now Mikey is afraid of other children. He has fun with adults who respect and love him, but he cries when he sees other children."

A viral TikTok of Molly's shows Mikey at the park with her at night, enjoying himself the same way any other child might.

"I haven't experienced one parent try explaining that Mikey's just another little boy to their child. One time, a little boy came up to me while his mom was shopping and says, 'He looks weird,' pointing to Mikey. I got down to his level and said, 'He's just a normal little boy. He may look a little different, but he's just like you.' The mom put her stuff down and grabbed his hand and ran out of the store," she recalls.

"So it's easier to go out at night because there's nobody around. At a park, he can be a kid and run around and have fun."

Everyone in the family makes sacrifices where it comes to giving Mikey the best life possible. Molly believes in staying positive, but she's also candid about the challenges her family faces.

"My life isn't easy. I take care of Mikey 24 hours a day. There are nights where I lay on his floor to take care of him. I'm exhausted. I live off caffeine," she says. "But I keep going for him. I'm trying my best to do whatever it takes to make his life somewhat normal. Just because he's got all these accessories and equipment, doesn't mean he doesn't need some normalcy. It takes coming up with ideas that are outside of the box."

"I feel bad for my girls. They're 13 and 14. I think they have it the hardest because they love their brother, but they how other people treat him. They've been through it all. We haven't had a normal vacation in five years because all of our trips have been medical. A lot of stuff involves what we can do for Mikey and it's hard to navigate."

She continues, "With the whole seizure thing, I've been afraid to take him anywhere that I'm alone with him. It hinders our normal day-to-day and our ability to easily do things as a family. Summer can't be a fun vacation thing because that's when the girls are out of school and we can take care of any travel-related medical stuff. But they're very good with him."

Molly has shared more of Mikey's story online, in hopes of connecting with other CDH families and families of medically complex children.

"I've met incredible people and made amazing connections, all thanks to Mikey. Not only do people reach out and find you who are in the same situation as you, but the larger medical community online is so supportive. Then there are people who don't know this life but connect with your story. I've had people send us snacks and toys for Christmas or Mikey's birthday. It's really nice to have that," she says.

With some difficult moments behind them, they're now focusing on all the things that Mikey loves.

"Mikey has love for music. We have our daily dance parties. He's adventurous and loves to play outside and explore. He has a love for cars. But he just loves to just play. Like he loves to be outside and be a happy kid," she shares.

"I hope people realize that Mikey's just a normal toddler. We struggle in life, but he's a normal, happy kid. I don't post all the negatives. We keep to the positives and accomplishments," Molly adds. "And that being different isn't a bad thing. We make the best out of it. Sometimes we barely get by, but we do it for our children. I just want people to get to know us and to be able to have that community. I think it helps me cope and not feel so alone."

The next step for the little boy is a visit to his craniofacial team to determine if a surgery is necessary this year.

"That will kind of determine the rest of our year. I want to do more things as a family. That's my goal, to get out there more, maybe plan a family trip and some activities that focus on the girls," Molly says. "Mikey's getting older and he's learning more and can do more, so we want to take advantage of that and keep him moving forward."

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