Mom reveals the devastating reason she only takes her four-year-old to the park at night…

A mother whose son suffers from a rare ailment thinks that sharing their story’s highs and lows may contribute to a more compassionate society.

Molly, who goes by @mommamolly_ on TikTok, tells people she wasn’t anticipating anything out of the norm with her third pregnancy. It was halfway through when she received devastating news.

“We were pregnant at the peak of COVID. We discovered our pregnancy immediately. Spouses couldn’t accompany you to doctor’s visits. The expectation was for me to independently determine the gender at 21 weeks. Molly tells people that the woman stopped what she was doing and went to the doctor.

“The doctor says nothing, but they insist I go to his office. He offers me a piece of paper and says, “This is what your son has.” It’s known as a congenital diaphragmatic hernia (CDH). It’s serious and rare. He tells me his chances of survival are zero.”

The doctor proceeded with prepping Molly to terminate the pregnancy. She contacted her husband from her car, distressed, and he held out hope.

“The commute home from my residence takes around ten minutes. It took me four hours to arrive home. I could not drive. I could not move. “I was just crying,” she explains. “When I got home, my husband looked at me and said, ‘We’ll figure this out.'” We are not losing him. “There has to be a way.”

During their investigation, the couple came upon Dr. David William Kays, medical director of the Center for Congenital Diaphragmatic Hernia (CDH) at Johns Hopkins All Children’s Hospital. They scheduled an appointment the next week and found that, according to Dr. Kays’ evaluation, their baby had a 95% chance of survival.

They went on with the pregnancy despite the fact that the prognosis was very different. One month before birth, several signs began to appear that suggested there could be something more going on, but the family remained focused on the CDH diagnosis.

“We had one month till Mikey was born. We had to leave Palm Beach and temporarily relocate to St. Petersburg because they wanted us closer. We had Mikey’s induction arranged. My parents came to care for my 8- and 9-year-old daughters while we went to the hospital. I had two scheduled births with the girls. “I didn’t think anything of it,” Molly says.

“Labor and delivery were horrible. I quickly fell asleep after receiving an epidural. They ended up trying to administer another epidural after another. I said, ‘I’m still in agony. There is still something incorrect. They wanted to give me more epidurals after I had already received several. My husband looked at them and said, ‘No, we need to conduct a C-section.’ They wanted to wait for the new doctor to arrive because there was going to be a shift change, and I just looked at my husband. He tells them, ‘We’re having a C-section because something is really wrong with my wife.'”

Molly discovered that Mikey was hooked to her pelvic bone, but they were able to free him before he was taken away.

“Mikey did not breathe at delivery. “They intubated him and took him to a specialized unit for CDH babies and children right next to the hospital,” Molly says.

“My husband waited until I was ready to go to Mikey. I did not see him until that night. “I refused pain medication so I could go see him,” she adds. “It was a fantastic unit, and he had terrific people observing him. He went well for the first two days, but on the third day, he had his lung ruptured and had an emergency ECMO.” ECMO, or extracorporeal membrane oxygenation, is a method of life support in which blood is pumped from the body to a heart-lung machine, according to the Mayo Clinic.

The terrifying moment terrified Molly and her husband, who were on their way home to inform their girls about their baby brother.

After our release, we were at home, reassuring our daughters that Mikey is doing well and everything is OK. Then we get a phone call indicating that Mikey is unresponsive. “He was unresponsive for about 20 minutes,” she reports. “Mikey received the highest degree of life support for 26 days. It was five weeks before I was able to hold Mikey.”

Although tough to bear, the hospital visit provided additional potential solutions for the family.

“While on ECMO, they did genetics. I looked at a piece of paper, and it stated Pfeiffer syndrome. I recalled it from the list of syndromes. And that’s how I discovered Mikey has Pfeiffer syndrome.

Boston Children’s Hospital defines Pfeiffer syndrome as “a complex genetic disorder in which certain bones in the skull fuse early in their development.”

Molly and her husband attended a program where they learned how to care for Mikey’s many demands, which seemed doable in some cases but very overwhelming in others.

“The first day, we learned about the G-tube, and the second, we played rounds with them. We looked at them and said, ‘We can’t take him home.’ It was terrible because we were promised we’d be going home for Christmas and everything would be OK, but we sensed something was amiss and that taking him back would be a horrible option. It was one of the most difficult decisions we’d ever had to make.

“Mikey had tongue and lip adhesion done to give him a clear airway,” Molly elaborates. They performed the skull surgery by opening up the rear of his skull and fusing it together. However, airway difficulties persisted, necessitating another intubation. He continued failing to thrive. They said, ‘That may be Mikey’s baseline.’ And we said, ‘No, there’s still something wrong.’ ”

By February, they had decided to proceed with a tracheostomy.

“We went through a month of testing and learning,” Molly says. “I needed to get Mikey out of the hospital, home, and feeling better. I was also homeschooling the children at the time, so it was a lengthy six months. Mikey returned home on March 26. It was a long road home and the most difficult moment of our lives, but we made it.”

Mikey is now four years old and has exceeded expectations in several areas, making his parents extremely proud.

“We spent four years doing everything on our own. I’ve never gotten aid. I’ve never had any experience with nursing. I have done a lot of therapy on my own. Molly adds, “We built things in our house to help him with walking therapy.”

“They told us he would never walk because of the ECMO. They warned us that he might never be able to eat by mouth. They warned us that he might never speak. My spouse and I just pushed. I don’t sleep much. My husband sleeps very little. “We’ll do whatever it takes for Mikey,” Molly replies. “We’ve been all over the place, and despite the fact that it’s hard and exhausting, my son is walking. He’s jogging. He’s laughing. He is eating. He’s accomplishing things that we were told had a minimal, if not zero, possibility of happening. I mean, we were told he wouldn’t make it through delivery, and here he is.”

There have been some setbacks, though. “It’s been terrifying and difficult. “I feel alone sometimes,” Molly admits. “No one understands the trauma and post-traumatic stress disorder that we experience. Mikey awoke three times in one year, unable to breathe.

Mikey’s parents assumed he had a cold a week before Christmas 2024. Molly was about to provide a breathing treatment when she saw her kid had become blue.

“I put him on the pulse oximeter, and his oxygen level and heart rate were both low. Something was amiss, so we rushed to put him on his ventilator and dialed 9-1-1,” she said.

“He started getting seizures. Only one side of his body moved, but he was unresponsive and had bubbles coming out of his mouth. “Mikey wasn’t there,” she recalls with anguish. “We put oxygen on him, and they came and took him to the hospital. He experienced two additional seizures.

Mikey is now “doing great” after receiving anti-seizure medicine.

“It’s been a big transition. He’s eating more by mouth and attempting to speak more. “He has more energy and has gained 3 pounds, which is huge for him,” Molly explains.

Molly wishes to offer Mikey as many possibilities as possible. Nonetheless, she confesses that transporting medical equipment when attempting to participate in activities that other families take for granted can be difficult. She also acknowledges the challenges posed by social pressures.

“I was afraid to take him out to do ‘normal’ things,” she recalls one incident. “I just wanted to take my son to the park across the street from our house. It’s close enough to stroll, and the weather was lovely. Mikey was still learning how to stand, so I took him to the park.”

“We arrive there, and there’s a lady with a small child, maybe 5 or 6, who continues watching at Mikey while he plays. He began shouting and yelling, and his mother, who was on the phone, appeared upset at having to deal with it. She walks to her kid, then comes up to me and says, “Listen, my son is afraid of your son.” Is there a possibility you may leave? Because he’s terrified, yet he has to play.”

Molly hurriedly got Mikey in her stroller, watching the woman as she walked away. She burst into tears a few minutes later.

I took a few steps back and shed tears. I contacted one of my friends and told her what occurred; she suggested I go back and have Mikey play, but I couldn’t. “It took us a while to get back to parks,” Molly adds.

“But everywhere we go, people stare at us, asking, ‘What’s wrong with that kid?’ or ‘It’s a monster.'” We don’t receive youngsters asking to play with Mikey. It’s really rare. We go to stores or parks and empty the entire area because parents avoid Mikey rather than teaching their children the correct thing. It’s extremely terrible that Mikey is now terrified of other youngsters. He enjoys being with grownups who respect and adore him, yet he tears when he sees other children.

A viral TikTok of Molly’s shows Mikey is enjoying himself in the park with Molly at night, just like any other youngster would.

“I have yet to see a parent try to explain to their child that Mikey is just another little boy. One day, a tiny child approached me while his mother was shopping and said, ‘He looks funny,’ referring to Mikey. I went down on his level and said, ‘He’s just a regular young guy. He may appear different, yet he’s just like you. “The mother put her belongings down, grabbed his hand, and ran out of the store,” she recounts.

“So it’s simpler to go out at night when there’s no one around. At a park, he can be a kid and run about and play.”

Everyone in the family makes sacrifices to ensure Mikey has the greatest possible life. Molly believes in maintaining a cheerful attitude, but she is equally open about the difficulties her family experiences.

“My life is not easy. I care for Mikey around the clock. Some nights, I lay on his floor to care for him. I am fatigued. “I live off caffeine,” she admits. “But I keep going for him. I’m doing my best to make his life more normal. Even though he has all of these devices and equipment, he still requires some normalcy. Thinking creatively is essential.

“I feel sorry for my girls. They are 13 and 14. I believe they have the most difficult situation since they love their brother yet are concerned about how others treat him. They’ve gone through it all. We haven’t taken a typical vacation in the past five years, as all our vacations have been medically related. A lot of it is about what we can do for Mikey, and that’s difficult to manage.”

She goes on, “With the whole seizure situation, I’ve been hesitant to take him someplace where I’ll be alone with him. It interferes with our usual daily activities and our capacity to accomplish things as a family. Summer cannot be a wonderful vacation time since the girls are out of school and we can take care of any travel-related medical needs. But they’re kind to him.”

Molly has posted more of Mikey’s experience online, hoping to connect with other CDH families and families with medically complicated children.

“Mikey has helped me meet wonderful individuals and make amazing connections. Not only do others who are in similar circumstances seek you out, but the online medical community also provides support. Your narrative moves people who are unfamiliar with this existence. I’ve had individuals bring us snacks and presents for Christmas and Mikey’s birthdays. It’s wonderful to have that,” she says.

@mommamolly_♬ Days Like These by Luke Combs – Luke Combs

They’ve moved past some challenging times and are now concentrating on everything Mikey loves.

“Mikey loves music. We offer daily dancing parties. He has an inquisitive spirit and enjoys playing outside and exploring. He has a passion for vehicles. But he just likes to play. “He loves to be outside and be a happy kid,” she says.

“I hope people understand that Mikey is simply a normal toddler. We have difficulties in life, but he is a normal, joyful child. I do not post all of the downsides. “We focus on the positives and accomplishments,” Molly says. “And that being different isn’t always a negative thing. We strive to fully embrace our uniqueness. At times, we face financial challenges, yet we persevere for the sake of our children. I simply want people to get to know us and be able to form a community. I think it helps me cope and feel less alone.”

The next step for the little boy is a visit to his craniofacial specialists to see if surgery is required this year.

“That will sort of shape the remainder of our year. I want to do more activities with my family. “That’s my goal—to get out there more; maybe plan a family trip and some activities for the girls,” Molly adds. “Mikey’s getting older; he’s learning more and can do more, so we want to take advantage of that and keep him moving forward.”