Harley

It is every expectant mother’s worst nightmare: During what is a seemingly routine ultrasound, the technician swiftly puts down the wand to go get a doctor.

A million possibilities race through your mind as you lay there, rubbing your belly, hoping that your baby is ok, waiting for a doctor to give you the news. News that you know is probably not good.

It was during Chyanne Loewen’s 24-week ultrasound that she and her husband, Markus, learned that their baby’s stomach was not showing up on the scans. After several meetings with doctors, they found out their son likely had esophageal atresia, a rare birth defect that causes a gap in the esophagus. For the time being, the baby was doing well and fed by mom through the placenta, but once out in the world, it would mean he could not swallow or eat food orally.

Harley was born on October 31, 2018 and taken to the Neonatal Intensive Care Unit (NICU) where doctors confirmed the diagnosis. The gap in Harley’s esophagus was too long to connect so all they could do was wait for Harley to grow. A feeding tube was inserted to provide nourishment to the newborn until surgery could take place.

Everything seemed to be going well considering the diagnosis, but then when Harley was just five days old, Chyanne noticed something was wrong with her son. His feet were cold and he wasn’t moving much. The skilled NICU nurses swung into action and discovered a hole in the feeding tube, which was causing milk to leak into Harley’s peritoneum (the large membrane in the abdominal cavity that connects internal organs). The leak caused Harley to go into septic shock, a potentially fatal condition, and the newborn was rushed into emergency surgery to clean out the fluid. Although incredibly sick, the strong little boy sailed through surgery and began his recovery.

Harley stayed in the NICU for three long months. Mom and dad couldn’t take him home because he could not swallow saliva and needed a tube in his throat to drain the fluid. But a very determined Chyanne and the amazing surgeons figured out a way for Harley to go home during the day and return to the hospital at night. Even that small reprieve was a huge step and a welcome break for everyone after such a lengthy NICU stay.

In mid-March, when he was 4.5 months old, the surgeons decided it was time to connect Harley’s esophagus. This is just what they’d been waiting for, and Chyanne and Markus were cautiously optimistic. Unfortunately, once doctors began the surgery, they saw that the two ends could not be brought together and Harley would have to grow even more before the procedure could be done successfully. The wait would continue.

But the wait would not be easy. Post-surgery, there was a leak in Harley’s esophagus. His saliva was draining into his right lung, causing it to completely collapse. A breathing tube had to be put in, along with a chest tube to drain the fluid. To help Harley recover, doctors put him on paralyzing drugs to temporarily prevent excess movement. Once again, he began the slow process of healing.

A week after the attempt to connect his esophagus, doctors went in to fix the leaking esophagus. Due to a bad infection caused by the leak, the majority of his esophagus was compromised and it was now too fragile to connect. As an alternative, they brought the esophagus to a hole in his neck to help drain saliva. After a few more weeks in the hospital to recover, Harley was finally able to go home at five months old, although he must be tube fed.

“The Children’s Hospital has done so much for us. After almost losing my son twice, it was the amazing doctors who saved him,” says Chyanne. The mother chose to share her son’s story to bring awareness to the incredible work being done at the Children’s Hospital every day, and “increase donations to the hospital as it is so deserving.”

There is still a long road ahead as the now one-year-old will be having gastric pull-up surgery done in the future. As his esophagus is not salvageable, during this procedure, Harley’s stomach will be lifted to meet the remaining tissue and establish a full connection between the throat and stomach, allowing Harley to eat normally.

This vivacious little boy will continue to face tough times, but with the help of HSC Children’s Hospital and its donors, he will live a happy life.

Make a donation to the Children’s Hospital Foundation today to help Harley and the thousands of other children that depend on the hospital each year.