As 10-month-old Nolan Moore bounces on his mom’s leg – cooing, laughing and grabbing anything in sight – it’s hard to believe he has had such a long journey in such a short time.
Unexpectedly to his parents, Laina and Joel, Nolan was born in May 2018 with right-ear microtia atresia – a small ear without a canal opening – and Congenital Heart Disease. Since then, Nolan has gone through open-heart surgery, met with a number of specialists and gone to therapy.
In spite of all that, his folks said he’s doing well.
“Other than the visual of looking at him and knowing he doesn’t have an ear, you would never know he has done all of these things, and that’s a huge gift,” Laina Moore said. “We realize that we’re the lucky ones in this situation. We, unfortunately, have seen people with children with heart conditions that have not gotten the happy ending that we’re getting. That’s not lost on us, and we’re very thankful for that.”
Nolan’s parents said they were unaware of any complications during pregnancy and “did every possible test that you could imagine and everything came back normal.”
Joel said they weren’t even aware after he was born and finding out came as a shock.
“When he was born, I walked over, the nurses had him, and we actually both really did not see it at first,” he said. “He went over to the table, and the nurses go, ‘Well, dad, he doesn’t have an ear.’ You just stop for a moment and are like, ‘I’m sorry, did I hear you correctly? Did you just say he doesn’t have an ear?’… it was kind of like, ‘Well, I wasn’t expecting that.’”
After finding out about the ear, the Moores went through a checklist of other body parts that develop in the womb around the same time, including the spine, eyes, kidneys and heart, and Nolan visited specialists for each in his first month and got good reports on all.
Except his heart. That, doctors found, had “two very large holes.”
“He was already in heart failure at that time, so they immediately started a diuretic that day. So 3-and-a-half weeks old and taking a diuretic,” Laina said. “He always had trouble eating, so all of it made sense: his breathing was really labored, his circulation was really bad. Then it was like, ‘This is clear, because now we have a reason.’”
In November, 6-month-old Nolan had open-heart surgery, which his mom said included “a very scary circumstance happen; we weren’t quite sure he was going to make it.”
“He obviously did,” Laina said, tearfully. “He is still in heart failure post his operation. They don’t know why his heart function is low, so he’s on heart failure medication, and he’s doing well with that.”
The medical issues put Nolan behind with some developmental milestones, but he is now working with therapists and specialists to get back up to speed.
“Before surgery, he couldn’t lay on his tummy for tummy time or even pull his legs up. If he did, he would actually expend all of his energy and gasp for air to try to get it back in,” Laina said. “Pre-surgery, he wasn’t hitting his milestones of rolling over, sitting up and those things.”
Spreading his story
Finding out about Nolan’s diagnoses was a big change for the couple.
“For probably the first six weeks, we cried every day, as you can imagine, and then just had a really hard time adjusting,” Laina said, “and then, we woke up one morning like, ‘This is something that he has. It is not who he is.’”
That also meant a lot of questions from friends and family, so Laina started a blog.
“It was just a place for me to dump everything that I wanted to dump on there,” Laina said, “and we started connecting with more people, connecting with more families and more people started reaching out.”
Outside of those they knew, the blog, called The Story of Moore, and other online groups also connected the family with others who were facing similar issues with their children.
“The thing that I keep hearing is it is nice to have someone who wants to openly talk positive about it,” Laina said. “We really just took the approach, ‘I never want him to think this is wrong,’ because this is nothing we could control. This is just how you were born and the circumstances you were given.”
Connecting with parents in comparable situations helped the Moores get advice and know what to expect, and now, they are the ones giving advice to those with children younger than Nolan.
“When you watch your child almost pass, you join a small group of people you never wanted to join, and being able to connect with people that understand the weight and the magnitude of what you’re going through is rare, but it is a gift,” Liana said.
Most importantly, they wanted to have something in place that Nolan could look back at when he is older.
“We knew that one day we wanted him to be able to read his story, so by sharing it with other people we were also creating this time capsule, if you will,” Laina said. “It was very healing for me to be able to write it online and then be able to share that story and connect with others.
“I’m a huge researcher by trade, and I went online trying to find information, and you can find statistics. I wanted to know, like, ‘How did somebody feel when this was going on? What did this look like?’ and I couldn’t find that, and I wanted to make that.”
With Nolan’s first birthday coming up on May 14, the family wants to celebrate through giving to others, specifically medical staff and patients at Children’s Healthcare of Atlanta-Egleston Hospital, which has the system’s cardiac care service and is where Nolan was treated.
One of those gifts will be the parents sponsoring a Feed the Heart meal, which provides meals for all cardiac patients and their families.
“While we were there, you don’t leave the room, you’re worried the whole time about your child, even after surgery. There’s so many things that they have to check,” Joel said, “and it was really eye-opening to us that someone would be that generous to people they don’t even know, so we were very drawn to that.”
With the dinner, the families will get a second gift, which Nolan is a pretty big fan of.
While he was going through his stay in the hospital, Joel and Laina brought a Baby Shusher, a product that, as the name implies, makes a shushing sound for infants that helps soothe them, which they found out about from a friend.
“I was like, ‘That is great,’ because when you have a newborn that is crying a lot and you sit there and shush, shush, shush, it can be a little exhausting,” Joel said.
Laina said based on Nolan’s reaction, she decided to reach out to the company and planned to buy one for each room in the cardiac unit. They quickly raised that amount and decided to also purchase one for each patient to take home.
In just over a week, the couple is less than $200 from their goal of raising $2,400.
“While we were in the hospital, so many doctors and nurses would come in the room and hear the sound, and they would be like, ‘Oh my gosh, what do you guys have playing? Is that a recording?’” Laina said. “So many people were just attracted to it and drawn to it, because that’s such a natural sound.”
To follow Nolan’s story, got to StoryofMoore.com.
Donations can be made at GoFundMe.com/f/storyofmoore.