Botox used to treat excess salivation in newborn, avoiding tracheotomy
1 day ago

TORONTO — Botox may be best known as the injection of choice for smoothing out wrinkles, but a Canadian physician has expanded its use to help save the life of a child born with a rare but devastating birth defect.

The case involved a Montreal infant born with CHARGE syndrome, a complex disorder which affected his ability to swallow and left him drowning in saliva that seeped into his lungs. The aspirated secretions caused repeated bouts of pneumonia and the need for the baby to go on a respirator to keep him breathing.

For the parents, "it was devastating," Dr. Sam Daniel, an otolaryngologist at Montreal Children's Hospital, said Monday.

Usually in such cases, the infant would be given a surgical tracheotomy, in which a breathing tube is inserted through an incision in the windpipe.

"The trouble with that is there is (a high risk of) mortality from the procedure, especially at a young age," Daniel said from Montreal. "But also the tube can plug or get dislodged, in which case the child can die."

"The main problem is it entails a lot of care."

The baby must stay in hospital for an average of six months while the parents learn how to clean the device, suction out secretions, change the tube and how to resuscitate the child if breathing stops once they get home.

"I've seen couples break because it's too much for them," Daniel said. "They need nursing care or community support. It's a lot of work. It's very scary and not everyone can handle that."

In the case of the Montreal infant, there was a chance that CHARGE syndrome might also make him blind. (CHARGE syndrome is a rare disorder that arises during early fetal development and can affect multiple systems, including the eyes, ears, heart and brain.)

So the first-time parents, who asked not to be identified, refused the surgical implant because of what it would mean for them and their child, said Daniel, who reports the case in Tuesday's issue of the Archives of Otolaryngology.

"They couldn't live with the concept of their child ending up with a tracheotomy," he said, explaining that they worried that if the breathing tube had to remain permanently, their son would have little quality of life as he grew older, especially if he were also blind.

"And also they were overwhelmed themselves. So they were torn between deciding to unplug the ventilator, which meant he would die ... and they're the ones that pushed for something to be done other than the tracheotomy."

So Daniel decided to try something that had never before been performed to his knowledge on a child so young - he injected Botox, or botulinum toxin, into the nerves that controlled the saliva glands of the 10-week-old infant in a bid to reduce secretions.

Within two weeks of the injections, the baby was weaned from the ventilator and sent home. Now three, the child has had to return for a few more periodic Botox shots, but has not had pneumonia or needed a respirator since, Daniel said.

The boy, who also did not lose his sight, is doing fine, said Daniel, who has done more than 1,000 Botox injections in young children, including 12 in newborns, not all of whom were afflicted with CHARGE syndrome.

Dr. Jean-Philippe Vaccani, a pediatric otolaryngologist at the Children's Hospital of Eastern Ontario (CHEO), has used Botox to treat children, but not newborns.

"I think it's a branching out really of a technique that's already used for drooling in older kids, and it's just that no one had used it yet at this age, at the newborn age," Vaccani said from Ottawa. "So I think he's just pushing the limit really of where we were with the use of Botox beforehand."

"But his results have been very impressive with the use at this age ... I think we're definitely contemplating it if we were to have a similar situation at CHEO to offer the treatment to the parents or describe it to them."

Since Daniel's pioneering procedure, which was undertaken after careful consideration by the hospital ethics board, he has had patient referrals from all over North America and Europe, and has trained physicians in dosage and injection technique appropriate for such young patients.

But botulinum toxin can help ease excess salivation in youngsters with a variety of conditions, not just those with CHARGE, he noted. The injections can also help adults with Parkinson's disease or Lou Gehrig's disease (ALS) who have similar difficulties dealing with saliva.

"A lot of kids with neurological problems, like cerebral palsy or severe seizures, have problems with swallowing and they end up with pneumonia," he said. "A number end up in hospital three or four times a year with pneumonia, in the ICU."

"I think Botox is a good option for a lot of these children, and adults, and has made a great difference in their lives."

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