When Riley Foster was born prematurely at 8 ½ months old on March 20, 2020, so much was unknown: How would his genetic deletion and duplication impact his health and survival? How long would he be in the Arkansas Children’s Neonatal Intensive Care Unit? How would the COVID-19 pandemic impact their lives?
For first-time parents Chris and Meghan Foster having a multidisciplinary team at Arkansas Children’s Hospital in Little Rock walking alongside them made a stressful start to Riley’s life one of triumph.
"Arkansas Children's was so great at holding our hands through the whole thing. Having those specialty doctors and knowing we can come here and he can get all of the support he needs is so helpful to us," Meghan said. "During that time, I was very vulnerable, a big mess. They were so compassionate and understanding. I'm sure they had to repeat themselves a million times, but they just never seemed to get frustrated. … We were just hoping Riley would be alive and well to get him out of the NICU. All these different teams were working together to help us once he was out of the NICU and moving forward. And are still helping us."
Today, Riley is all smiles and giggles, extremely curious about the world around him with a hint of mischief. A little "spitfire," as his dad put it.
"He can be very determined when he wants to be," Meghan said. "We just love him so much."
This reality wasn't always a guarantee for Riley. He was in the ACH NICU for 11 weeks when he was born with only his mother, Meghan. Due to COVID-19 safety protocols quickly put in place, his father, Chris, could not see him in person for most of his stay.
"Arkansas Children's helped Riley out by really coming alongside Meghan since I could not be there with her. I think I was able to visit 15 times in the three months that he was in there," Chris said. "They really came alongside her and helped her through a lot of the stuff, especially with just being a new mom and all the stuff that comes with that. … We got to do skin to skin, so I at least got to hold him against my chest before I wasn't allowed to come back. And that meant a lot to me."
Toward the end of his stay, Chris joined Meghan in a private room, allowing the family to learn all the information needed to successfully care for Riley at home. While the Little Rock couple knew there were concerns about Riley's overall health when he was not gaining weight in-utero, they didn't know exactly what they'd be facing until he was born.
Riley has a chromosome seven genetic anomaly, causing a variety of abnormalities and developmental conditions. He sees ACH medical experts in cleft, cardiology, ENT, general surgery for his G-tube, genetics, complex care, dental, vision and others. His most significant surgeries were heart and cleft palate repairs.
Of all his care team members these days, Riley most frequently sees Adam Johnson, M.D., a pediatric otolaryngologist at Arkansas Children’s Hospital and associate professor of otolaryngology at the University of Arkansas for Medical Sciences.
"Riley's condition requires an extreme amount of multidisciplinary care. The way we do that is we coordinate not only with cleft, lip and palate, but we also have to coordinate with his heart surgeries, as well as speech gets involved, nutrition gets involved, and actually see him on a regular basis in order to make all of that happen," Johnson said. "The nice thing about Arkansas Children's, and we do multidisciplinary care here so well, is that everything is here in house."
Johnson performed Riley's cleft palate repair in April 2021 and, in October 2022, widened his nose and repaired his stenosis. About one in 700 children is born with cleft palates.
"He had an incomplete cleft palate, meaning he had basically a hole in the roof of his mouth that didn't go all the way to the front. My job was to repair that, to basically separate his mouth and nose from one another," Johnson said. "Riley's cleft surgery was vital because without closing that area, often having that separation between nose and mouth, you get a lot of feeds up from your mouth into your nose. It becomes difficult to even swallow."
Beyond the medical care, Riley's care team has connected the family with resources at ACH, like financial counseling and social work, to community resources. For example, when the ACH ophthalmology team diagnosed him with cortical visual impairment (CVI), they connected the family to an Arkansas School for the Blind and Visually Impaired program with CVI experts to offer support.
“It’s a service I would have never known about if not for Arkansas Children’s Hospital directing us there,” Meghan said.
Today, Riley is thriving. Johnson said it's a testament to his family and ACH's medical collaboration.
"I absolutely just adore Riley. I just remember meeting him for the first time, and he had those cute little chubby cheeks," Johnson said. "His family has just always been so sweet. They've been open in their communication, and they've just been so helpful in us providing him care."
Chris said he's told ACH medical experts "a million times 'Thank you,'" and will continue expressing his appreciation. For Meghan, just soaking in family time, whether cuddling him at home or going to the zoo, are moments they treasure, thanks to ACH.
"Riley still has a very long road ahead of him, and we're going to be at Arkansas Children's for the long haul. Knowing how they've been there for us these last few years encourages us to keep going. It's helpful to know we have a place that is right here and is readily available and has supported him so well in our toughest times," Meghan said. "It gives you encouragement to keep going and gives us hope to keep pressing onward. … Without them, Riley wouldn't be here."