Kathy sat quietly before me in one of our pediatric exam rooms, dabbing tears from her eyes. Beside her sat her husband, Mitch, his right hand clenched so hard that his fingers had gone white. Jasper, their 3-month old son, lay swaddled in Kathy’s arms, struggling to breathe, the veins on his tiny neck bulging with each desperate inhalation. (The family’s names have been changed for privacy.)
The silence between Kathy and Mitch was palpable, and it was obvious that they were somehow at odds.
Days after Jasper’s birth, I had diagnosed him with laryngomalacia, a congenital condition in which the structures of the voice box become too soft, flopping over the airway opening and jamming it up. Children with this condition produce a haunting sound when they inhale as the excessively soft cartilage in their voice box collapses.
Many infants will outgrow laryngomalacia, their breathing improving within the first 18 months of life as their cartilage matures and the strange sounds dissipate. Roughly 5 to 10 percent of infants require surgical repair, since their breathing is so strained that it interferes with their ability to eat. Of these children, a very few don’t respond to the repair. These infants need a tracheostomy, in which a surgeon cuts a hole in their neck and places a small, hollow plastic tube below their voice box so they can safely breathe. Once the airway matures, the surgeon can then remove the tube, and, in most cases, the child can go on to live a normal life.
A tracheostomy is a fairly routine surgery in technical terms, requiring only about four or five minutes to complete, but it wreaks havoc on families. Parents have to learn how to care for the plastic tube in their child’s neck. They must suction it, clean it several times a day, and change it every two weeks. If the tube becomes plugged, the child could suffocate and die.
Jasper’s condition had worsened, despite two previous attempts at surgical repair. Each night, he struggled to eat. Each bottle feed, which takes 10 minutes at most for a baby who is breathing normally, took 45 minutes. Kathy was staying up all night with her son, terrified that he would stop breathing altogether. Jasper hadn’t gained a pound in two weeks — an ominous sign, what we in the pediatric world call “failure to thrive.”
Kathy and Mitch now faced the agonizing choice of whether to have me perform a tracheostomy. Having spoken with other mothers whose children had needed the procedure, Kathy believed that this was best for Jasper. She was exhausted, and she couldn’t take any more nerve-wracking, sleepless nights. “I’m just scared,” she said. “Everything in me tells me something’s wrong.”
Mitch vehemently disagreed. “How do we know he won’t get better on his own soon?” he asked. “When he’s not struggling to breathe, he’s just fine.” He nodded at his wife. “She’s catastrophizing!”
In Mitch’s defense, during the day, when he spent the most time with Jasper, his son’s breathing did seem slightly better. Mitch wanted to give Jasper more time before having me perform such an invasive surgery. He just couldn’t believe we’d run out of options.
Mitch and Kathy had been having this same conversation for days now. As I sat with them, attempting to steer them toward agreement, I didn’t quite know what to say. In my past experience, parents who disagreed at first about their child’s treatment did always reach a consensus. Yes, I’d encountered divorced parents who just couldn’t agree, but on those occasions, I’d left it to our legal department to hash it out. Here, for the first time, I faced a married couple who, despite their best efforts, just couldn’t come to a decision.
Medical school didn’t offer any training on mediation, though I did learn early on about the concept of informed consent — how important it is for patients to understand the tests and procedures being performed, and to have a chance to have their questions answered. But in the pediatric arena, the process of informing is muddy. The law requires that only one parent consent to a test or procedure on a minor. When doctors obtain consent, they almost always obtain a single parent’s consent, and assume that his or her partner agrees
In Jasper’s case, I knew what the right course of action was: He needed a tracheostomy. So I improvised an approach to counseling Mitch and Kelly. I advised them to switch roles and let Mitch care for Jasper for a few nights, even if that meant taking a few days off work. That way, he could experience what Kathy was experiencing. Finally, I told them that there was no “right” answer here, and they ultimately had to make the best decision they could, and live with the consequences.
I don’t know if that exercise made the difference, but they came back to me a week later and told me that they wanted Jasper to have a tracheostomy. I performed the surgery, and Jasper did just fine. Kathy and Mitch took him home, and they suffered through a year of vigilant care. Then, when Jasper had grown out of his laryngomalacia, I removed the plastic tube. Today, he is breathing by himself, and the small scar on his neck is barely visible.
I recently asked Kathy and Mitch what my team and I could do to help other parents who disagree with one another in the face of difficult decisions. Kathy’s reply stays with me: “Doctors, please, have patience with us. When we ask the same question over and over, know that it’s not because we haven’t paid attention. It’s because we can’t agree — and are terrified. We are in shock. Help us.”
It’s only natural that parents disagree now and then about the treatment for their child’s condition, just like they disagree about discipline, schooling, and screen time. But the stakes are higher. The more tools doctors like me can utilize to help them reach consensus — like if the American Academy of Pediatrics issued mediation guidelines — the better off the children, and their parents, will fare.
Christopher Hartnick, M.D., is a professor at Harvard Medical School and director of the Pediatric Otolaryngology Division at Massachusetts Eye and Ear Infirmary. All views represented in this article are those expressly of the author himself. Some details of the case have been changed.