Allow me to introduce myself, my name is Kristina, A.K.A Aunty Lovejoy, but more recently, I have been promoted to the best title yet, Wally’s godmother. I started Wally’s Best Life Fundraiser to relieve some of the financial burdens of his ongoing medical care and therapies and shine a light on a very real yet surprisingly unrecognized medical condition.

The spectrum of tongue restriction has been a hot topic amongst medical professionals over the last few years, and choosing a side of the controversy seems required. Ties can cause various effects on infant growth and development and, in many cases, can be solved without serious intervention. Still, it can cause some infants various health issues and life-threatening complications.

My experience as a surgical RDA has given me the ability to work with oral surgeons who have done many transformative pediatric TT procedures here in California. I was surprised to find that the child's restriction often went undiagnosed until symptoms involving speech behaviors presented, even though the condition had been present since birth. What if we are missing a significant opportunity to help these children earlier? What if cases like Wally’s were actively checked at the newborn assessment long before severe complications existed?

The tongue is the essential muscle used when swallowing and speaking, but tongue restrictions are not considered a point of concern in most medical practices. In some severe cases, it can cause the child to be unable to speak.

“Every child deserves a voice. As a parent, it is your responsibility to fight like hell to make sure the concerns for your children are heard. Personally, I make no apologies for challenging medical controversy or policy. Our names may not follow with “MD,” but we know our children better than anyone else. If something feels off, it probably is.” - A.I. Wrona, Wally’s Mom

Wally needed a voice, literally and figuratively speaking.

He was born with a severe clinical presentation of Ankyloglossia, more commonly known as “tongue-tie.” His family spent over six weeks in the NICU over the holidays with a healthy baby that would not eat and months begging pediatricians to acknowledge the countless tell-tale signs of a symptomatic tongue restriction.

The contention among medical professionals caused Wally’s symptoms to be ignored and rejected for nearly eight months.

Ultimately, the delayed "belief" in his condition led to life-threatening complications. Wally was hospitalized for chronic aspiration pneumonia, FTT and ultimately lost his ability to swallow due to the prolonged restriction. Without this crucial tie-release surgery, it was likely that he would have never been able to speak at all.

Wally struggled with long feeding times, taking volumes, gaining weight, and ultimately struggled to hit his milestones. His condition made eating traumatic, uncomfortable and painful, but he remained such a happy baby despite his suffering. He was clicking, gurgling, choking and coughing in every feeding. He could “spit-up,” but he could never spit it out. He had a very weak cry; he could not clear his throat comfortably, and milk would pour out of his nose during every feeding. He could not tolerate any thin liquids, including breastmilk, and everything he drank needed to be thickened using rice. These concerns were shared and noted with the pediatricians, but they did not seem to think it was an issue since he was still on the growth curve. His parents were continuously told that ties are not a "real" concern.

His parents reached out to the pediatricians multiple times for help as to what they could do to support him. They were told to switch the bottle, change the nipple size, and try feeding upright, side-line. However, nothing seemed to help improve his difficulty eating. Seventeen different types of bottles, along with every single nipple option for each bottle, to no avail. He was constantly fed around the clock to ensure he was getting enough to stay on track. He could only take enough to keep himself gaining the slightest amount of weight. When formula shortages began, Wally refused the ever-changing formula types and struggled to stay on track. Everyone begged the pediatricians to take a moment to watch him eat, but they refused.

Due to the long waitlists and labor shortages, it took months to get him to finally be evaluated by a speech pathologist. Within minutes of his evaluation, his speech team had noticed the same thing they had been concerned about since the days they spent feeding him in the NICU.

On July 14th, 2022, Wally’s condition was confirmed soon after and he was diagnosed with a class III posterior tongue tie and a level IV upper lip tie.

The oral surgeon's evaluation found that his ties had ultimately caused severe restrictions and very limited range of motion. The back of his tongue would cover part of his airway while breathing and choke him as he tried to swallow, restricting his jaw and face to such degree that it prevented him from proper growth.

After his surgery, anyone who knew baby Wally could see the miracle unfolding. Within one week, he was eating, drinking, and breathing better than he ever had. Finally, everyone had hope for his recovery. We were all so excited to see him progress so quickly, but the symptoms that remained after his surgery still had his mother worried. He continued to shoot milk out of his nose during bottle feedings.

Despite his massive improvement, Wally could not seem to kick his chronic aspiration issues and was rushed into the ER for complications from pneumonia. This episode led his mother to demand urgent evaluation after they were discharged. She had waited long enough for her son to finally have a chance to live his best life, and she was not about to stop now.

It was time to raise hell until he got what he needed, and that’s exactly what she did.

To everyone’s dismay, three emergency room visits were needed in order for him to be admitted for an evaluation regarding feeding aspiration. Yet again, they were forced to prove the symptoms were a result of the severity of his tongue tie. For the first week, the mother was berated as crazy, uninformed, and in denial of the child’s other possible ailments. She was told what he was experiencing was impossible.

The doctors had put poor baby Wally through rigorous testing for degenerative muscle disorders, multiple neurological examinations, traumatic procedures, endoscopies, and swallow studies to FINALLY conclude their son's issues are a result of his symptomatic tongue restriction. The pathologist at the hospital noted that Wally’s first swallow study evaluation performed at just 26 days old had even shown the severity of his condition.

In the end, Wally has done the impossible. He has proven his condition is medically evident and very much relevant.

It is time to scream it from the rooftops– Tongue-tie is not a myth, and it can have life-threatening complications for infants if left untreated.

Unfortunately, the only way for Wally to safely eat is by the implanted feeding tube in his stomach due to the loss of his swallow reflux, which was weakened over time from his restriction. He will need extensive speech and feeding therapy support and observation from multiple specialists for an extended period of time. Wally will have to break all of his previously learned eating habits and learned trauma responses, as well as how to use his throat muscles. He will need to completely relearn how to eat and drink safely and physical therapy to get back on track and stay there.

At the end of the day, he will need a lot of help to get his chance at his best life.

His family has exhausted everything they had to get him where he is now. The financial fears over how they can make this possible can be overwhelming, especially considering Wally's intensive appointment schedule, requiring full-time attention from a parent. Between medical bills from the NICU, emergency room visits, co-pays, surgeries, weeks of inpatient hospital care, therapy sessions with intervention, childcare for their other children while they attend appointments, a new wardrobe of adaptive clothing and supplies for his new "tubie" life, they are praying for another miracle.

No child deserves to have their voice stolen by medical controversy.

We all hope that sharing Wally's story will help a child struggling to snatch their voice out of the grasp of an unnecessary battle between specialists over a medically evident health condition.

It's time to raise hell and spread awareness

share your story using #TongueTieDontLie

Follow Wally's recovery on Instagram --> @WallysBestLifeFund