Marissa’s story: “Esophageal atresia is never going to define me”

10403713_10204937045012353_2613035753500070747_nMarissa Waite lives in the smallest town in Massachusetts, but she has a big story to tell. When her mother Vicky was pregnant with Marissa 13 years ago, an ultrasound detected esophageal atresia (EA), a condition where the esophagus isn’t connected to the stomach.

Vicky was admitted to Brigham and Women’s Hospital for the remainder of her pregnancy. “I’m a take-charge kind of person. When I was pregnant, I thought, ‘I’ll make all the decisions for my baby.’ But when complications arose, I realized I couldn’t make these kinds of decisions alone,” she says.

At that point, Marissa’s care team was born.

Double diagnoses: Esophageal atresia and ventricular septal defect

For weeks, Dr. Wayne Tworetzy and colleagues from nearby Boston Children’s Hospital walked to Brigham and Women’s to check in on their patient in utero. At birth, Marissa was put on life support and five days later, she was transported to Boston Children’s. There she received a feeding tube while her team of physicians came up with a plan.

As is sometimes the case with EA, Marissa had a ventricular septal defect (VSD), a hole in her heart’s lower pumping chambers. Her doctors needed to decide if they would work on her esophagus first or her heart. They decided to begin with a novel balloon catheterization technique to stimulate growth of the esophagus and wait to see if the VSD would fix itself.

Marissa at 6 hours old

Dr. Steven Fishman explains, “Marissa was born missing most of her esophagus. The traditional approach to this problem would be to replace the esophagus with stomach or colon, but we know the native esophagus works better. Based on an experiment of nature observed in another baby, I was convinced the small piece of esophagus that Marissa was born with could be induced to grow by a slow process of inflation. Her family was brave and allowed us to attempt this technique and as a result she has reaped the rewards.”

At four months, Marissa underwent surgery by Fishman to attach her expanded esophagus to her stomach. A few weeks later, Marissa went home to the tiny island of Nahant, but not for long.

Her VSD began to compromise her growth. At 7 months, Marissa underwent cardiac surgery at Boston Children’s to repair her VSD.

The next diagnoses: GERD and Barrett’s esophagus

Though Marissa’s health greatly improved after the VSD repair surgery, she has continued to battle medical challenges. She suffers from painful gastroesophageal reflux disease (GERD), which is treated with medication.

In 2012, an annual endoscopy revealed Barrett’s esophagus—a serious complication of GERD that increases the chances of esophageal cancer. “That was the point that we said this is for life. Now there’s the potential for something more to develop. Hopefully it won’t, but we just never know,” says Vicky.

In August 2012, Fishman performed a complete nissen fundoplication in order to prevent further expansion of Barrett’s esophagus. “A Nissen fundoplication is a procedure to wrap a portion of the stomach around the bottom of the esophagus to prevent food and stomach acid from refluxing back up from the stomach into the esophagus,” explains Fishman.

Unfortunately, when Marissa tried to start eating again, she couldn’t tolerate food or liquids and had to be fed through a nasogastric (NG) tube that went through her nose, past her throat and down into her stomach. “When your child is lying in a hospital bed helpless and you can’t do anything, you’re just lost,” says Vicky.

Marissa’s medical team performed a second operation to see if converting the fundoplication from a complete to a partial wrap would help. It did. By then, Marissa had lost 25 pounds. She was put on a liquid diet and couldn’t start 5th grade on time, but slowly her body healed and she was able to eat again.

Celebrating better health

Three years after her surgery, Marissa feels better. “I can eat pretty much anything and except for the annual endoscopies and biopsies, I don’t have to go to the hospital. I can just enjoy myself and hang out with my friends.”

For Marissa, enjoying herself includes getting involved in just about everything. She skis, paddleboards, dances competitively and just received her adult black belt in karate.

MarissaAt school, she started a book club, was inducted into the National Junior Honor Society and elected its president. She attributes her motivation to excel to her health issues: “Everything I’ve been through has made me strive to think positive, work hard and be the best person I can be.”

Marissa’s journey is not over. As Vicky says, “You can’t wrap this story up with a pink bow. This is a continual journey.” The medications that Marissa takes for GERD inhibit the iron in her body, so she suffers from anemia.

She gets her blood checked regularly at Boston Children’s at Peabody and travels to the Boston Children’s main campus for iron infusion therapy when needed. “It’s a short drive from Nahant to Peabody,” says Vicky, “so we get blood work done there, and they share the numbers with our doctors in Boston.”

Marissa continues to forge ahead. “I’m not a quitter. If I have my eye on a goal, I’ll keep going until I reach that goal because…why not? My esophageal atresia is always going to be a part of me, but it’s never going to define who I am.”

Learn more about Boston Children’s at Peabody.