When a Premature Baby Needs a Breathing Tube in the Neck: What Three New Studies Tell Families
A plain-language look at recent research on why some babies with chronic lung disease need a tracheostomy, what it means for their airway, and how they do in the years afterwards
Why some babies cannot come off the ventilator
A small number of babies born very early cannot be weaned off the breathing machine, and their team eventually raises the possibility of a tracheostomy — a small breathing tube placed through an opening in the front of the neck. Three studies published in 2025 and 2026 followed these children from before that decision through the years after it. Their combined message is reassuring: most of these children eventually come off the ventilator and have the tube removed.
That reassurance is worth stating early, because the moment when a tracheostomy is first mentioned is usually one of the hardest of a NICU stay. Parents often hear it as a step backwards — as the team giving up on their baby's lungs. The research below suggests something closer to the opposite. For babies whose problem is immature lungs rather than a permanent condition, the tracheostomy is usually a bridge, and most of them cross it.
What the lung condition is, and how families used to face it
Babies born many weeks early have lungs that are not finished. They have not yet grown the tiny air sacs and blood vessels that make breathing efficient, and the machines and oxygen that keep them alive also injure the delicate tissue. The resulting chronic lung condition is called bronchopulmonary dysplasia — BPD for short. It was first described in 1967, when doctors noticed that babies who survived on early ventilators were left with permanently scarred lungs [1]. Today doctors grade how severe a baby's BPD is by looking at how much breathing support the baby still needs at about 36 weeks — roughly the baby's original due date [2].
For decades, the babies with the most severe form were in an impossible position. They were too well to die and too sick to leave. They could not be taken off the ventilator, but the tube running through their mouth and voice box made it hard for them to be held, to feed, to babble, or to be discharged. As more extremely premature babies survived, more of them reached this point: one national study found that tracheostomy placement in extremely premature newborns in the United States rose by about a third between 2006 and 2012 [3].
Doctors were slow to embrace the operation, and for an understandable reason. The first large follow-up studies found that very premature babies who had received a tracheostomy did worse on later development tests than those who had not [4]. Whether that was caused by the tracheostomy or simply reflected how sick those babies already were, the effect was the same: teams treated it as a last resort. When researchers asked specialist centres how they decided, there was no shared rule — only a scatter of different pressure, oxygen, and age thresholds [5]. Two babies in identical condition could easily have the operation weeks apart depending on which hospital they were in [6]. That is the uncertainty the three new studies are trying to reduce.
Study one: which babies end up needing a tracheostomy
The first study came from the newborn intensive care unit at the University of Maryland Medical Center in Baltimore [7]. Researchers looked back over 18 years and found 30 babies born before 33 weeks who had received a tracheostomy. They then found 60 comparison babies born at the same time, at the same stage of pregnancy, and at the same weight, who had not. The question was simple: what was different about the first group?
Some of the differences could not have been changed. The babies who needed a tracheostomy were more often boys, more often born small for their age, more often transferred in from another hospital, more often affected by bloodstream infections, and much more often affected by high blood pressure in the lungs' blood vessels.
But two differences stood out because they might be changeable. The first was the number of times the breathing tube came out unexpectedly. An "unplanned extubation" happens when a tube is dislodged accidentally — during a nappy change, a repositioning, a cough. The babies who eventually needed a tracheostomy had a median of four of these, against one in the comparison group, and each additional one was linked to higher risk even after accounting for how long they had been on the ventilator. Every re-insertion of a tube through the voice box carries a small risk of injury, and the injuries add up.
The second was steroid medication. Babies who received more courses of steroids for their lungs were more likely to need a tracheostomy. The researchers are careful here, and so are we: this may mean that repeated steroid courses cause harm, or it may simply mean that the babies who needed several courses were the ones whose lungs were most damaged to begin with. This study cannot tell those apart. What it does suggest is that a baby who is still on the ventilator after two or three courses may be a baby whose whole plan should be reconsidered rather than given a fourth.
One more finding matters. In this hospital, tracheostomies were performed at around five months of age on average. Other research has found that babies who have the operation earlier — before roughly four months — tend to have better thinking and movement scores at two to three years old than those who have it later [8]. Waiting, in other words, is itself a decision with consequences.
Study two: what happens to the airway afterwards
The second study, from Ann & Robert H. Lurie Children's Hospital of Chicago, followed 82 children who had a tracheostomy placed before six months of age [9]. Half of them had BPD. Every child had regular scheduled camera examinations of the airway — the first about a month after the operation, then every few months for years.
The children with BPD had been on a breathing tube for about three months before their tracheostomy, compared with three weeks for the others, and their airways showed it. They were about three times more likely to develop narrowing just below the voice box, and about three times more likely to have swelling at the voice box itself. They were also more likely to need reconstructive surgery on the airway. Interestingly, problems related to the tracheostomy tube itself — softening or collapse of the windpipe around it — were equally common in both groups. It was specifically the damage from the long-term tube through the voice box that set the BPD children apart, which fits what is known about airway problems in this condition [10].
And yet here is the finding that surprised the researchers. Despite having more airway damage, the children with BPD were four times more likely to have their tracheostomy removed altogether, at an average age of a little over three years. There is no contradiction. Damaged lungs from prematurity grow and improve; the conditions affecting the comparison group — genetic syndromes, neurological injury, nerve and muscle disease — usually do not.
Study three: the years at home
The third study, from C.S. Mott Children's Hospital in Michigan, followed 222 children sent home on a ventilator through a tracheostomy over a decade [11]. It shows how much this population has changed. A generation ago, most children on home ventilators had spinal cord injuries or muscle diseases. Now the largest single group is children with BPD, and their share grew from a quarter to nearly two-fifths over the study period.
Their outcomes were the best in the cohort. Overall, about one in six children in the study died — but among the children with BPD it was about one in fourteen, and among those born extremely early it was lower still. More than eight in ten children with BPD eventually came off the ventilator completely, typically after about two years.
There is a hard part of this study that belongs in the same conversation. Of the 38 children who died, 16 died at home and another 10 died in hospital shortly after an emergency that began at home — and about one in five of all the deaths was traced to something that might have been prevented — a ventilator failing, a tube blocking, a tube coming out, or a caregiver not being present and alert. This is the reason hospitals insist on training two family caregivers before discharge and require someone awake with the child at all times [12]. It can feel like bureaucracy in the middle of an exhausting discharge process. It is not: it is the single measure most closely linked to the largest preventable category of harm [13].
What this means for your family, and what comes next
If your baby's team is raising the possibility of a tracheostomy, a few things from this research are worth holding onto. The operation is usually a bridge rather than a destination, and for babies whose lungs are immature rather than permanently abnormal, the odds of eventually coming off the ventilator and having the tube removed are good. Waiting longer is not automatically safer. Regular scheduled airway examinations afterwards are normal care, not a sign that something has gone wrong. And the care at home, though demanding, is where the greatest share of preventable risk sits, which is exactly why the training is so thorough.
Researchers are working on several things next. One is a better way to predict early which babies will need a tracheostomy, so that families can be prepared and the timing can be planned rather than reached by default. Another is finding out whether reducing accidental tube dislodgements — something hospitals can measure and improve — actually reduces the number of tracheostomies. A third is following these children further into childhood, since most existing studies stop at survival and tube removal rather than asking about breathing, speech, and learning years later [14]. Finally, several centres are showing that care organised around a dedicated chronic lung disease team, rather than left to whichever clinicians are on service, improves survival [15] — a change families can reasonably ask about.
References
- Northway WH Jr, Rosan RC, Porter DY. Pulmonary Disease Following Respirator Therapy of Hyaline-Membrane Disease. Bronchopulmonary Dysplasia. New England Journal of Medicine. 1967;276(7):357–368. doi:10.1056/NEJM196702162760701 ↩
- Jensen EA, Dysart K, Gantz MG, et al. The Diagnosis of Bronchopulmonary Dysplasia in Very Preterm Infants: An Evidence-Based Approach. American Journal of Respiratory and Critical Care Medicine. 2019;200(6):751–759. doi:10.1164/rccm.201812-2348OC ↩
- Wang CS, Kou YF, Shah GB, Mitchell RB, Johnson RF. Tracheostomy in Extremely Preterm Neonates in the United States: A Cross-Sectional Analysis. The Laryngoscope. 2020;130(8):2056–2062. doi:10.1002/lary.28304 ↩
- DeMauro SB, D'Agostino JA, Bann C, et al. Developmental Outcomes of Very Preterm Infants with Tracheostomies. The Journal of Pediatrics. 2014;164(6):1303–1310.e2. doi:10.1016/j.jpeds.2013.12.014 ↩
- Yallapragada S, Savani RC, Mūnoz-Blanco S, et al. Qualitative indications for tracheostomy and chronic mechanical ventilation in patients with severe bronchopulmonary dysplasia. Journal of Perinatology. 2021;41(11):2651–2657. doi:10.1038/s41372-021-01165-9 ↩
- Manimtim WM, Agarwal A, Alexiou S, et al. Respiratory Outcomes for Ventilator-Dependent Children With Bronchopulmonary Dysplasia. Pediatrics. 2023;151(5):e2022060651. doi:10.1542/peds.2022-060651 ↩
- Dudeck B, Abebe EW, Sun W, Gaskin PR, Viscardi RM, Cho E. Modifiable and Non-Modifiable Risk Factors for Tracheostomy in Preterm Infants. Pediatric Pulmonology. 2025;60(2):e71005. doi:10.1002/ppul.71005 ↩
- Taha A, Akangire G, Noel-Macdonnell J, Gladdis T, Manimtim W. The impact of early tracheostomy on neurodevelopmental outcomes of infants with severe bronchopulmonary dysplasia exposed to postnatal corticosteroids. Journal of Perinatology. 2024;44(7):979–987. doi:10.1038/s41372-023-01864-5 ↩
- Szymczak A, Hirsch B, Young A, et al. Tracheal Structural Changes in Tracheostomy-Dependent Children With Bronchopulmonary Dysplasia. Laryngoscope Investigative Otolaryngology. 2025;10(6):e70293. doi:10.1002/lio2.70293 ↩
- Hysinger EB. Central airway issues in bronchopulmonary dysplasia. Pediatric Pulmonology. 2021;56(11):3518–3526. doi:10.1002/ppul.25417 ↩
- Kreger JE, Reiner MC, Ramsey AM, et al. Outcomes of children after initiation of home mechanical ventilation via tracheostomy: a single center retrospective study. BMC Pulmonary Medicine. 2026;26(1):149. doi:10.1186/s12890-026-04184-4 ↩
- Sterni LM, Collaco JM, Baker CD, et al. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. American Journal of Respiratory and Critical Care Medicine. 2016;193(8):e16–e35. doi:10.1164/rccm.201602-0276ST ↩
- Kukora SK, Van Horn A, Thatcher A, Pace RA, Schumacher RE, Attar MA. Risk of death at home or on hospital readmission after discharge with pediatric tracheostomy. Journal of Perinatology. 2023;43(8):1020–1028. doi:10.1038/s41372-023-01721-5 ↩
- Annesi CA, Levin JC, Litt JS, Sheils CA, Hayden LP. Long-term respiratory and developmental outcomes in children with bronchopulmonary dysplasia and history of tracheostomy. Journal of Perinatology. 2021;41(11):2645–2650. doi:10.1038/s41372-021-01144-0 ↩
- Hansen TP, Noel-MacDonnell J, Kuckelman S, Norberg M, Truog W, Manimtim W. A multidisciplinary chronic lung disease team in a neonatal intensive care unit is associated with increased survival to discharge of infants with tracheostomy. Journal of Perinatology. 2021;41(8):1963–1971. doi:10.1038/s41372-021-00974-2 ↩