Une famille espère passer les Fêtes à la maison avec ses jumelles

Joelle Hasilo always knew she wanted to be a mother. So when she found out she was having twins she was beyond excited. And then her water broke 28 days early. “It was exactly like the movies,” she says. “I got up off the couch and then it was ‘swoosh’. It all started to feel very real in that moment.” She was rushed to the Royal Victoria Hospital (RVH) of the MUHC where she underwent an emergency c-section because both babies were breeched. Evelyne and Chloe were born two minutes apart on September 24, 2017.

Breaking the bad news

Since Joelle had just undergone surgery, her husband, Craig, was brought in to meet the twins first. Doctors informed him that they were having a hard time suctioning Chloe’s nose and the twins were rushed to the Neonatal Intensive Care Unit at the Montreal Children’s Hospital.

As Joelle recovered in post-partum, she was unaware that something seemed critically wrong with her daughter. The doctors were soon troubled by a second discovery: besides the suctioning problem, they were also having difficulty opening her eye. “They weren’t sure if the eye was too small or if she was missing an eye,” says Craig. “I then had to walk down the hallway to tell my wife that something was wrong with our daughter. It was the longest, hardest walk of my life because I just kept thinking of how I was going to break the news to her.”

The next day, Chloe was sent for a CT scan which confirmed that she was in fact missing an eye. Because her left eye never developed, her septum curved too much to the left causing the blockage of both nasal passages. “It was a critical and urgent issue, because she couldn’t breathe out of her nose and therefore couldn’t eat,” explains Craig. Doctors introduced an oral airway to help her breathe through her mouth while they waited for her to grow. She needed to weigh close to five pounds in order to have her first surgery.

Joelle and Craig then met with the Medical Genetics team to rule out any genetic disorders, and had consultations with Otorhinolaryngology (ENT) and Ophthalmology. “Eventually we’ll look into fitting Chloe for a prosthetic eye, but the more pressing issue is her airway problem,” explains Craig. Chloe was screened for various syndromes and underwent a series of genetic tests. “Doctors had never seen anything like this,” he says. “Sometimes babies are born with one of these issues, but never both at the same time.” All the genetic tests came back negative—Chloe was simply born with two major, unrelated anomalies. Her eye condition is known as Anophthalmia and her airway problem is called Bilateral Choanal Atresia.

Three surgeries in two months

At three weeks old, Chloe underwent her first surgery. The ENT team at the Children’s wanted to open up the right nasal passage to give her an airway. The surgery was successful and she started to bottle feed. Her sister, Evelyne, was discharged from the NICU the next day. “Bringing Evelyne home was such a bittersweet moment. I was so happy, but at the same time so sad that Chloe couldn’t go home with her,” says Joelle.

Chloe started to struggle again with her breathing and stopped being able to feed. Her nasal passage began to block again. On October 24, she had her second surgery. This time the team decided to make a larger opening on her right side and explored doing the same thing on the left. “At first it looked like it worked, but her nasal passages started to block again,” says Craig. “Alarm bells would go off every time she ate because her oxygen and heart rate would drop drastically as she struggled to breathe.”

Asking for extra help

Performing a third, similar surgery was not an option.  At this point, Dr. Lily Nguyen, a pediatric head and neck surgeon in Otolaryngology at the Children’s, got involved and decided to ask for help. She contacted Dr. Marc Tewfik, an ENT surgeon from the RVH. Last May, Dr. Tewfik became the first surgeon in North America to use a new augmented-reality technology, called Target Guided Surgery. There are a lot of danger zones when performing ENT surgeries due to the close proximity of the brain and eyes. This new technology allows surgeons to come up with a surgical roadmap that helps guide their instruments during surgery and alerts them if they veer off course.

Dr. Nguyen and Dr. Tewfik discussed the possibility of using it to help Chloe, making her the youngest patient to ever undergo such a surgery at the MUHC. “It took us several days to come up with a plan, because we had never worked with such a young patient,” says Dr. Tewfik. “I reached out to some of my colleagues for advice. Chloe is so small so I had to go through all of my equipment to pick out the smallest instruments because everything I have is adult-sized. Her nostrils were barely big enough to get the scope in.” On November 12, eight OR personnel from the Children’s and three from the RVH performed the surgery. “It was a real success,” says Dr. Nguyen.

As an extra precaution and because of her size, the ENT team also decided to insert a stent to help hold her septum in place as she healed. “Because of the stent, we had to suction every three hours to make sure her airways were clear enough to feed,” says Joelle.

So close, yet so far

Two weeks later, Dr. Nguyen and Dr. Tewfik removed Chloe’s stent and were happy with the healing process. The Hasilos were set to head home, but a new narrowing in Chloe’s nose, separate from the place that was operated on, was discovered a few days later. “Craig and I were completely devastated,” says Joelle. “We were so looking forward to going home.”

In the meantime, Joelle makes sure to visit the hospital every single day, with Evelyne in tow. “Evelyne and Chloe love co-sleeping together in Chloe’s crib,” she says. “They are better together. Chloe’s best medicine is having her sister by her side.” If all goes well, Chloe will be able to make it home for Christmas, but only time will tell. “She will come home when she’s ready. Hopefully, it’ll be in time for the holidays. Having her home is all we want for Christmas.”