Webb Murray Waddell was born one day shy of full term at a healthy 9lb and 1 oz...a big, strong, boy! It was summer - a slow time for most public school teachers. It is also a slower season for, Scott, too. So, the new family of three had the fortune of soaking up some extra time with their new addition.
It all began around late July when Webb was approximately 6 weeks old. A bottle fed baby from the start, he started to show some difficulties with feedings. Sometimes he would arch his back in discomfort. Sometimes he would have trouble digesting his formula comfortably. All typical signs of "silent reflux" or infantile gastrointestinal issues. After several weeks of playing what Laura calls "formula roulette", she sought the help of Webb's pediatrician who suggested a more gentle formula. This worked for a few weeks... until it didn't. The Friday before Laura's maternity leave ended consisted of a desperate visit to the pediatrician again for guidance.
Webb was just not eating enough.
Laura and Webb went home with a new, highly specialized formula specifically blended for babies with allergies and trouble digesting cow's milk protiens.
After about 5 weeks on this elemental formula, it was evident that Webb's feeding struggles had not been helped. He had not gained weight, and things were at a breaking point.
A recommendation from a wonderful friend, Jennifer, led Laura and Scott to see Pediatric GI Specialist, Dr. James Lamphear. Jennifer's son had also dealt with GI complications, and encouraged them to pay him a visit.
Dr. Lamphear would turn out to be a Godsend to the Waddells.
After an initial visit, he ordered some lab work and testing to assess Webb's feeding issues.
Long story short, all the lab work came back fine.
No allergies, no protein processing deficiencies, a clear swallow test... nothing.
At this point, Webb was only consuming enough to not become dehydrated during the course of the day - approximately 12oz within a 24 hour period.
So - why wouldn't this child eat?
Tuesday, October 26th, 2021
Laura called Dr. Lamphear's office frantic. Webb had only consumed 10 ounces of formula that day. He was making no gains. Something just was not right.
Dr. Lamphear suggested they take him to the Children's Hospital of Georgia emergency room as a precautionary measure.
Upon arrival and initial evaluation, the doctors were alarmed at Webb's "failure to thrive". He had completely fallen off the growth chart, and had not gained weight in over six weeks.
Webb was promptly admitted to CHOG in Augusta, Georgia to help get him back on the path to health.
While at the hospital, the battery of tests and procedures began. Webb underwent an upper endoscopy complete with biopsies of his GI tract, an ultrasound of his brain, and countless lab tests to check his blood for markers of abnormality.
After a six day stay, Webb was sent home with an NG feeding tube, a weekly scheduled outpatient visit with a Speech Language Pathologist, and distraught parents and family who now were feeding him with the help of a tube and a pump.
Nobody understood, nor could they explain, what the underlying cause of Webb's troubles were. The Waddells were discharged on Halloween just in time to try and rescue some normalcy from this new, and frightening reality.
Dr. Lamphear explained to Laura and Scott that Webb's NG tube placement would be a temporary fix. NG tubes were not a long-term solution. "They're just not physiologically sound", he explained. NG tubes leave open the route from esophagus to stomach. If anything, it can make extreme reflux symptoms worsen.
Not to mention, maintenance of an NG tube is nothing short of horrific.
It requires checking placement with a stethoscope and pH strips before every feeding. It requires daily taping and adhesion to the face. It requires the use of a pump that has its own learning curve to program the correct volume and rate of feeding.
In short ...It. is. awful.
Because Webb still was unwilling to take anything orally, a surgery was scheduled to place a G tube on the Monday of Thanksgiving Week.
During this period, Webb was still on the elemental formula, and was slowly gaining weight. He had frequent bouts of vomiting which were easily explained by the "open" digestive pathway due to the NG tube placement.
However, after the G tube was placed, the vomiting continued.
The G Tube surgery constituted another hospital admission for Webb.
It was, by all accounts, a quick and simple surgery.
Feedings were much easier now, and there was hope on the horizon for more comfort equating to more weight gain and an increased desire to try to eat orally.
Unfortunately, that was not the case.
Weekly SLP visits and changes in formula did not equate to oral feeding success.
Scott and Laura were constantly reassured that "sensory issues" are complex, and can take a long time to overcome. Also, if they stayed the course, they would see results.
So, they stuck with it. They stuck with the vomiting, They stuck with the therapy. They stuck with weekly weight checks. They stuck with the different trials of various food textures and cup types to try and find something... anything that Webb would like.
That was until something troubling appeared... very troubling.
Saturday, February 5th, 2022
Laura woke Webb up from his afternoon nap and started preparing his supplies for feeding. As she sat down and started feeding him, she noticed something very different happening in his right eye.
As she sat there rocking him, his eye seemed to dance back and forth from side to side.
It sent a feeling of panic through her as she consulted Dr. Google, and took videos to be sure and show the doctor the second she had the opportunity.
It was the weekend, and emergency clinic hours were over for the day. So, unless she took Webb to the ER, this would have to wait until tomorrow.
He exhibited no other signs or symptoms, and continued to play and laugh like he normally did.
The next day, Laura and her mom took Webb to the Sunday after hours clinic to be seen by the on-call doctor. This doctor agreed that this eye shaking - called nystagmus - would require a neurology and ophthamology referral.
The next Friday, they found themselves in Dr. Strickland's neurology clinic.
"Well... I don't like it," she explained. "Anytime something appears unilaterally, it is concerning to me." She was referring to the fact the nystagmus was present only in his right eye as opposed to both. Out of her concern, she asked Dr. Goei in ophthamology to see Webb first thing Monday morning, and scheduled an MRI for the first available appointment that same Thursday.
After an ophthamology exam, which included examining optic nerves after dilation, Dr. Goei gave some encouraging news to Laura and Scott. She explained the color of his optic nerves appeared how they were supposed to, and that she was "looking really hard" to try and find anything. There was discussion of a few benign conditions, including spasmus nutans, that could be investigated further...
After an MRI.
Thursday, February 17, 2022
The MRI appointment came with much anticipation. At this point, Laura had all but completely convinced herself it was going to come and go like every other appointment had. Every time Webb had undergone a test or procedure, the results came back clear and fine. Never any indication of serious underlying issues.
This time it would be different.
Scott and Laura were told the MRI would last approximately 30 to 45 minutes, and the results would be shared with them within 24 hours.
As time continued to creep past, and 45 minutes turned into an hour, and then an hour and a half, the concern worsened.
After waiting for what seemed like an eternity, someone came to get Laura and Scott from the waiting room. "Mr. and Mrs. Waddell, can you come with me? The doctor would like to speak with you."
Words that no one ever wants to hear.
Scott and Laura were ushered to an empty room with two chairs and a small table where they were told, "I'm so sorry. There has been a problem." Dr. Cagle informed them, "Almost immediately we had to change plans for our imaging. Webb has a brain tumor."
Time seemed to stop in that moment, and seems to have been on pause ever since.
Life is not normal, and will not be normal for them, until Webb is healthy and home.