Enjoying every day: Renee’s story

renee visits with her grandfather
Renee visits with her grandfather. (PHOTOS COURTESY OF THE SEAVER FAMILY.)

Hitting double digits is a milestone for any kid, but it’s particularly special for Renee Seaver and her family. Once told that their daughter likely wouldn’t survive until age one, her parents recently celebrated Renee’s tenth birthday with her. “Renee is the heart and soul of our family,” says her mother, Michelle. “We enjoy every day we have together.”

Michelle and her husband, Billy, knew during her pregnancy that Renee might have some health challenges: She wasn’t processing amniotic fluid properly, and clinicians suspected that she might be born with a rare but serious condition called esophageal atresia with tracheoesophageal fistula (EA/TEF). In this congenital anomaly, the esophagus grows in two separate segments that don’t connect, but does connect abnormally to the trachea (windpipe). This makes it impossible to receive enough nutrition by mouth and increases the chance of aspirating, or inhaling food or liquid into the lungs.

Physicians confirmed this diagnosis soon after Renee’s birth — and within just a few hours, the Seavers found themselves on the telephone, discussing surgical options for their tiny daughter. “Renee was only 12 hours old and we had to trust this voice on the phone explaining what would happen next,” Michelle remembers.

Renee with her grandmother and mom
Renee with her grandmother and mother

‘No one I trust more’

That voice on the phone belonged to Dr. Russell Jennings, co-director of the Esophageal and Airway Treatment Center at Boston Children’s Hospital, who explained the surgical procedures he would use to repair Renee’s esophagus and airway. The operations were successful, and Dr. Jennings and the team went from being faceless clinicians to an integral part of the Seavers’ lives. “Now, there’s no one I trust more than them,” says Michelle.

Although Renee’s EA/TEF had been addressed, it was only the beginning of a long medical journey for the little girl. She had also been born with four holes in her heart, which were surgically repaired when she was 5 weeks old by Dr. Emile Bacha, then a cardiac surgeon in Boston Children’s Heart Center. In all, Renee spent the first six weeks of her life in the Neonatal Intensive Care Unit.  

smiling girl with esophageal atresia
Renee smiles; with her father

An uncertain future

But perhaps the family’s greatest challenge came when genetic testing revealed that Renee had partial trisomy 18, a chromosomal disorder that can be fatal for many babies. Her parents were finally able to bring her home from the hospital — but the future she faced was uncertain. Clinicians warned the Seavers that few babies with trisomy 18 live to see their first birthday. Because of this, there’s little good information about what to expect in older children with the disorder. “It’s like a final exam that you don’t get to study for,” says Michelle. “There’s always something to figure out.”

Over the years, Renee and her parents have formed relationships with a variety of Boston Children’s clinicians, from the palliative care team to Dr. Tobias Loddenkemper, a neurologist who treats her seizures. For the most part, her diagnosis of EA/TEF “has mostly remained in the background,” says her mom. “We’ve had the luxury of not having to worry about it that much.” Still, when Michelle happened to run into Dr. Jennings during one of Renee’s hospital admissions, he asked why they were there and scheduled a test to check on her esophagus and airway. “It’s so nice to know he’s still watching over her, even now,” she says.

Renee wearing a pink scarf

Finding their way

A happy, friendly child, Renee loves being with her family, including her grandparents, who live with her. While she’s non-verbal, “she’s the most verbal non-verbal person you’ll ever meet,” laughs her mother. “She definitely makes her wishes known.”

Ten years out from what could have been a devastating diagnosis, Renee isn’t just alive — she’s thriving. “I want other families to know that they don’t have to be afraid and that they’ll find their way,” says Michelle. “Your child can still have a great life, even if it’s a shortened life. Nobody comes into this world with an expiration date.”

Learn about the Esophageal and Airway Treatment Center