Pediatric Cardiology

Medical and Surgical Interventions

At a Glance

Medical and surgical care for children with Trisomy 13 is individualized: heart surgery, tracheostomy, and feeding tubes may support survival, breathing, nutrition, or home care in selected children, but they also carry serious risks and demanding long-term caregiving needs.

In the past, many medical centers automatically declined major surgeries for children with Trisomy 13, assuming the condition was “uniformly lethal.” However, medical and ethical consensus has shifted ^[1]^[2]. Today, experts recommend that decisions about surgery should be made on a case-by-case basis, focusing on your child’s unique anatomy, overall health, and your family’s goals ^[3]^[4].

While these interventions can improve survival and quality of life for some, they are complex and require a high level of ongoing care ^[5]^[6].

Cardiac (Heart) Surgery

Heart defects are a leading cause of health challenges in Trisomy 13. While surgery carries significant risks, it is no longer off the table ^[7].

Benefits: Studies show that for selected children, heart surgery is associated with lower in-hospital mortality and can significantly prolong life ^[8]^[9]. One study found that children who had heart interventions had a median survival of 14.8 years, though this reflects a highly selected group of survivors ^[10]. It is important to note that these studies are observational; infants chosen for surgery are generally older and more stable, so surgery itself is not the sole cause of longer survival.
Risks: Surgery in this population is high-risk. National data suggests an operative mortality rate of about 15% for children with Trisomy 13 or 18 ^[5]. Complications, such as the need for a prolonged ventilator stay or infections, occur in about 56% of cases ^[5]^[11].
Selection: Doctors look at several factors before recommending surgery, including the child’s weight, whether they are already on a ventilator (which increases risk), and the complexity of the heart defect ^[5]^[12].

Breathing and Airway Support

Many children with Trisomy 13 have “floppy” airways or central apnea, making it difficult to breathe independently ^[13].

Tracheostomy: This is a surgical procedure to create an opening in the neck for a breathing tube. In small groups of children with Trisomy 13, a tracheostomy has been shown to stabilize breathing and allow many to eventually be discharged home ^[14].
Outcomes: One study found that children who received a tracheostomy had higher 1-year and 3-year survival rates compared to those who did not, though this often means the child requires home mechanical ventilation and intensive 24/7 caregiver training to prevent fatal tube blockages ^[15]^[16]. Again, higher observed survival does not prove that tracheostomy causes the difference, as children must be stable enough to undergo the procedure.

Nutritional Support (G-Tubes)

Because of swallowing difficulties, many children (about 9% in some national inpatient samples) receive a gastrostomy tube (G-tube), which allows formula and medicine to be delivered directly to the stomach ^[6]^[17].

Impact: A G-tube can provide stable nutrition and simplify daily care. Research indicates that children who receive a G-tube often have higher rates of surviving to leave the hospital, likely because it is a tool used for children who are stable enough for home care ^[17]. It does not, however, prevent a child from aspirating their own saliva or experiencing severe acid reflux.
Complications: While generally safe, about 19% of children undergoing non-cardiac surgeries like G-tube placement may experience minor postoperative complications, such as leakage, skin infections, or painful granulation tissue ^[14].

Balancing Life-Prolonging and Comfort Care

It is important to remember that these interventions are not “all or nothing.” You can choose some surgeries while declining others ^[18]. Palliative care teams are essential here; they can help you weigh the benefits of a surgery against the burden of recovery, ensuring that your child’s comfort remains a top priority regardless of the path you choose ^[19]^[20]. When parents of children with Trisomy 13 or 18 who chose heart surgery were surveyed, many reported a high quality of life for their children, suggesting that for some families, these interventions are a deeply meaningful choice ^[21].

Common questions in this guide

Can a child with Trisomy 13 have heart surgery?

Heart surgery can be considered case by case. Doctors assess the heart defect, the child’s weight and overall stability, whether the child needs a ventilator, and the family’s goals. Surgery can improve survival for some carefully selected children, but it has substantial risks and cannot guarantee a particular outcome.

How risky is heart surgery for a child with Trisomy 13?

Heart surgery is high risk. National data have reported about 15% operative mortality and complications such as prolonged ventilation or infection in about 56% of cases among children with Trisomy 13 or 18. Individual risk varies with the child’s condition, heart defect, weight, and need for ventilator support.

What does a tracheostomy mean for a child with Trisomy 13?

A tracheostomy creates an opening in the neck for a breathing tube and may stabilize floppy airways or central apnea. It can help some children leave the hospital, but many need home mechanical ventilation, and caregivers require intensive training to prevent dangerous tube blockages.

Why might my child with Trisomy 13 need a G-tube?

A G-tube delivers formula and medicines directly to the stomach when swallowing is difficult, providing stable nutrition and simplifying daily care. It does not prevent aspiration of saliva or severe reflux, and minor complications such as leakage, skin infection, or painful granulation tissue can occur.

Can we choose some treatments and decline others for our child?

Yes. Care is not all-or-nothing, and families may choose some interventions while declining others based on the child’s condition, expected benefits, burdens, and goals. Palliative care can support comfort and help families make decisions whether or not life-prolonging treatments are pursued.

Get notified when new evidence is published on Trisomy 13 syndrome.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.

References (21)

1
Guidance for Caring for Infants and Children With Trisomy 13 and Trisomy 18: Clinical Report.
Pyle AK, George TN, Cummings JJ, et al.
Pediatrics 2025; (156(2)) doi:10.1542/peds.2025-072719.
PMID: 40685149
2
Ethical challenges and justice concerns for infants and children with life-limiting conditions and significant disability, including trisomy 13 and 18.
Pyle AK, Mercurio MR
Seminars in perinatology 2025; (49(6)):152101 doi:10.1016/j.semperi.2025.152101.
PMID: 40517086
3
The American Association for Thoracic Surgery (AATS) 2023 Expert Consensus Document: Recommendation for the care of children with trisomy 13 or trisomy 18 and a congenital heart defect.
St Louis JD, Bhat A, Carey JC, et al.
The Journal of thoracic and cardiovascular surgery 2024; (167(5)):1519-1532 doi:10.1016/j.jtcvs.2023.11.054.
PMID: 38284966
4
The common trisomy syndromes, their cardiac implications, and ethical considerations in care.
Kosiv KA, Mercurio MR, Carey JC
Current opinion in pediatrics 2023; (35(5)):531-537 doi:10.1097/MOP.0000000000001278.
PMID: 37551160
5
Cardiac Surgery in Patients With Trisomy 13 and 18: An Analysis of The Society of Thoracic Surgeons Congenital Heart Surgery Database.
Cooper DS, Riggs KW, Zafar F, et al.
Journal of the American Heart Association 2019; (8(13)):e012349 doi:10.1161/JAHA.119.012349.
PMID: 31237190
6
Changes in Hospital Care of Newborn Infants with Trisomy 13.
Ignatz-Hoover AO, Farghaly MAA, Crist A, et al.
Maternal and child health journal 2025; (29(5)):622-627 doi:10.1007/s10995-025-04072-z.
PMID: 39987298
7
Contemporary Trends in Cardiac Surgical Care for Trisomy 13 and 18 Patients Admitted to Hospitals in the United States.
Greenberg JW, Kulshrestha K, Ramineni A, et al.
The Journal of pediatrics 2024; (268()):113955 doi:10.1016/j.jpeds.2024.113955.
PMID: 38340889
8
Congenital Heart Surgery on In-Hospital Mortality in Trisomy 13 and 18.
Kosiv KA, Gossett JM, Bai S, Collins RT
Pediatrics 2017; (140(5)) doi:10.1542/peds.2017-0772.
PMID: 29046387
9
Outcomes of heart surgery in neonates with trisomy 13 and 18: a systematic review with metanalysis.
de Sá Bittencourt Câmara Bastos C, Vale da Cruz L, Hirano Arruda Moraes L, et al.
European journal of pediatrics 2025; (184(7)):430 doi:10.1007/s00431-025-06274-7.
PMID: 40537699
10
Long-Term Outcomes of Children With Trisomy 13 and 18 After Congenital Heart Disease Interventions.
Peterson JK, Kochilas LK, Catton KG, et al.
The Annals of thoracic surgery 2017; (103(6)):1941-1949 doi:10.1016/j.athoracsur.2017.02.068.
PMID: 28456396
11
Impact of trisomy 13 and 18 on airway anomalies and pulmonary complications after cardiac surgery.
Swanson SK, Schumacher KR, Ohye RG, Zampi JD
The Journal of thoracic and cardiovascular surgery 2021; (162(1)):241-249 doi:10.1016/j.jtcvs.2020.08.082.
PMID: 32981701
12
Factors Influencing Outcomes After Cardiac Intervention in Infants with Trisomy 13 and 18.
Peterson R, Calamur N, Fiore A, et al.
Pediatric cardiology 2018; (39(1)):140-147 doi:10.1007/s00246-017-1738-y.
PMID: 28948390
13
Clinical courses of children with trisomy 13 receiving intensive neonatal and pediatric treatment.
Nishi E, Takasugi M, Kawamura R, et al.
American journal of medical genetics. Part A 2018; (176(9)):1941-1949 doi:10.1002/ajmg.a.40350.
PMID: 30152146
14
Safety and efficacy of noncardiac surgical procedures in the management of patients with trisomy 13: A single institution-based detailed clinical observation.
Shibuya S, Miyake Y, Takamizawa S, et al.
American journal of medical genetics. Part A 2018; (176(5)):1137-1144 doi:10.1002/ajmg.a.38678.
PMID: 29681109
15
Impact of tracheostomies on the long-term survival of patients with trisomy 13 syndrome.
Tamaki S, Iwatani S, Hagimoto S, et al.
American journal of medical genetics. Part A 2023; (191(11)):2736-2742 doi:10.1002/ajmg.a.63393.
PMID: 37658587
16
Medical procedures and outcomes of Japanese patients with trisomy 18 or trisomy 13: analysis of a nationwide administrative database of hospitalized patients.
Ishitsuka K, Matsui H, Michihata N, et al.
American journal of medical genetics. Part A 2015; (167A(8)):1816-21 doi:10.1002/ajmg.a.37104.
PMID: 25847518
17
Gastrostomy Tube Placement in Patients With Trisomy 13 and 18: Surgical Decision Making and Outcomes.
Mannava SV, Muraru R, Mesfin FM, et al.
Journal of pediatric surgery 2025; (60(5)):162249 doi:10.1016/j.jpedsurg.2025.162249.
PMID: 40010013
18
Shared decision making and the pathways approach in the prenatal and postnatal management of the trisomy 13 and trisomy 18 syndromes.
Andrews SE, Downey AG, Showalter DS, et al.
American journal of medical genetics. Part C, Seminars in medical genetics 2016; (172(3)):257-63 doi:10.1002/ajmg.c.31524.
PMID: 27557275
19
Cardiac Interventions for Patients With Trisomy 13 and Trisomy 18: Experience, Ethical Issues, Communication, and the Case for Individualized Family-Centered Care.
Cleary JP, Janvier A, Farlow B, et al.
World journal for pediatric & congenital heart surgery 2022; (13(1)):72-76 doi:10.1177/21501351211044132.
PMID: 34919485
20
A Case Study of Trisomy 13: Balancing Hope and Reality.
Stafford CO
Advances in neonatal care : official journal of the National Association of Neonatal Nurses 2015; (15(4)):285-9 doi:10.1097/ANC.0000000000000208.
PMID: 26225597
21
Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery.
Weaver MS, Birge N, Hsu H, et al.
Cardiology in the young 2020; (30(2)):231-237 doi:10.1017/S1047951120000013.
PMID: 31964456

This page provides general information about medical and surgical options for children with Trisomy 13 and does not constitute medical advice. Discuss your child’s anatomy, health, care goals, and expected benefits and burdens with their medical team.