Jake was born via C-section on April 3, 2019, at Advocate Children’s Hospital – Oak Lawn to Jeannie and Adam Clemens. It didn’t take long to realize that something was wrong.
“He turned blue twice while I was nursing him,” explained Jake’s mom, Jeannie Clemens. “He was taken to the neonatal intensive care unit (NICU), where he had several tests and an X-ray done. They were trying to get a tube down his throat to get fluid to his stomach, but they couldn’t get the tube to go down.”
Jake was diagnosed with tracheoesophageal fistula, an abnormal connection between the esophagus (the tube that leads from the throat to the stomach) and the trachea (the tube that leads from the throat to the windpipe and lungs), which causes fluid and food to get into the airway. Normally, the esophagus and the trachea are two separate tubes.
“We met with Dr. Manish Raiji, the surgeon, who consulted with Dr. Jonathan Sherman, a pediatric ear, nose and throat specialist. Dr. Raiji explained everything – even drew us pictures and showed us how he was going to separate Jake’s esophagus and trachea.”
The day after he was born, Jake had the separation procedure.
“Sending your newborn to have surgery is one of those moments you just can’t prepare for,” recalled Jeannie. “We were allowed to hold him until he had to be taken to the operating room, but then we had to say goodbye. We felt so helpless, but we trusted the doctors.”
Jake’s surgery appeared to have gone well. He spent 12 days recovering in the NICU.
“That first week was really hard. Jake wanted to eat and be held – and we couldn’t give him what he needed. He was so uncomfortable with all the tubes and being hooked up to machines. But we got through it, and eventually, he was able to eat and swallow and keep his food down. The nurses were amazing; they helped us so much during his time in the NICU.”
Before Jake was discharged from the hospital, he had lots of visitors.
“Our doctors, nurses and therapists came in to check on us. We met with a speech pathologist about feeding techniques,” said Jeannie. “Being in the hospital is never great, but with everyone there to support us, it went pretty well.”
Despite all the support and training they received at the hospital, going home was still stressful.
“I was terrified to feed Jake. We still weren’t exactly sure how well he was eating. There were scary times when he didn’t take a bottle well and started choking.”
Jeannie knew something wasn’t right. Jake had a follow up appointment and met with a speech pathologist who ordered a swallow study X-Ray. She took Jake to the hospital to feed him while the speech pathologist observed.
“They did an X-ray and found that fluid was leaking into his airway, but they couldn’t see where the leak was. So, we were admitted to the hospital again,” said Jeannie.
Doctors put a scope down Jake’s throat for a better look, but they couldn’t find a hole. So, Jake went in for another surgery where his trachea was cauterized to seal off any tiny holes that might be letting fluid in from his esophagus. The procedure was a success.
“We are forever grateful for the doctors and nurses that helped Jake pull through this. He is doing amazing.”
Jake recently turned 1 and, in honor of his first birthday, his family collected more than $3,000 to support the NICU team and provide supplies to them during the COVID-19 crisis.
“It was a very easy decision,” explained Jeannie. “We have friends who are nurses on the front lines of this crisis who can’t take days off, and who are putting their own health at risk to help others. We’re just glad we were able to do a fundraiser – we have so many generous people in our lives.”
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