Congenital disorders are fairly common in the United States, affecting around 1 in every 33 babies born each year. Some congenital disorders can cause serious health issues, and in some cases, limited lifespan. One category of congenital disorder is known as trisomy. Read on for more information about caring for babies born with trisomy 13 & trisomy 18.
What is Trisomy?
Humans have 23 pairs of chromosomes in each of their cells. These chromosomes pair up during conception, one coming from mom and one from dad, adding up to 46 individual chromosomes.
Children born with trisomy have an extra copy of one chromosome, meaning they have 3 chromosomes instead of 2 in a particular DNA pair. The most common and well-known form of trisomy is trisomy 21, or Down syndrome. The two less common trisomy disorders are trisomy 13, or Patau syndrome, and trisomy 18, or Edwards syndrome.
Health Impacts from Trisomy 13 & Trisomy 18
Trisomy 13 and trisomy 18 have more serious health impacts than Down syndrome (trisomy 21) as they affect nearly every organ in a baby’s body. Miscarriage rates are higher with pregnancies where trisomy is present and most babies that are born with trisomy 13 or trisomy 18 only survive a few days or weeks. Those who survive will deal with lifelong limitations in their development and overall health.
Thankfully, medical treatments for trisomy are progressing and some children with these conditions are living longer- with a small number living into their teens and 20s! But, it is important to understand the issues your child may face if they are born with trisomy 13 or trisomy 18:
Trisomy 13:
- low birth weight
- small heads with sloping foreheads
- brain structure differences affecting speech, learning, and more
- close-set eyes, many times with eye problems
- low-set, unusually shaped ears
- underdeveloped nostrils
- extra fingers & toes
- unusually shaped feet
- purplish-red birthmarks
- heart and kidney defects
- problems with feeding, usually needing a long-term feeding tube
- problems with breathing, sometimes requiring a long-term breathing tube
- internal organs hanging outside the body- other problems with different organs
Trisomy 18:
Babies with trisomy 18 experience many of the same issues as those with trisomy 13. Nearly 90% will have heart defects. It can also make them frail and thin. Other common problems include:
- small mouth and jaw
- cleft lip or palate
- weak cry
- clenched fists with fingers that won’t extend
- high blood pressure
- seizures
- hearing loss
- spina bifida (part of the spinal cord exposed)
- scoliosis (curved spine)
Diagnosis
Trisomy can be diagnosed before babies are born by testing their DNA through a sample of mom’s blood or through the fluid in her uterus, called amniotic fluid.
After birth, an initial diagnosis can often be made based on the baby’s physical appearance and health issues. This initial diagnosis can be confirmed later through DNA testing to help the medical team guide treatment.
Causes
Trisomy 13 and 18 are more common among parents aged 35 and older, but all cases are caused by random genetic mutations that are not triggered by something you did or did not do. Don’t be hard on yourself if you didn’t eat perfectly or exercise enough during pregnancy. The American Academy of Pediatrics does recommend making healthy choices during pregnancy, but your lifestyle choices did not lead to your child’s health problems.
Trisomy 13 and 18 also does not run in families the way that cancer and heart disease do. Even though trisomy is caused by genetics, it is not passed down from the parents.
Treatment
Babies born with trisomy 13 or 18 are typically cared for in the hospital’s neonatal intensive care unit (NICU) unless the family has decided to keep baby with mom after birth to focus on comfort care. Treatments are specific to the child’s condition and health challenges. Some life-threatening issues, such as heart defects, make be corrected with surgery. Your medical team will work with you to create a treatment plan that is best for your baby and aligns with your wishes and values.
The American Academy of Pediatrics updated their guidance in 2025 to help medical professionals and families manage the challenges that come with trisomy 13 and 18. These recommendations include:
- Medical teams should inform parents that their baby’s lifespan will be shortened significantly. Currently, only 5-15% of babies with trisomy 13 or 18 make it to their first birthday. Babies who do survive will deal with significant issues with movement, language, learning, and more. There is growing hope for lengthening the lifespans of these babies, but there are also controversies that arise surrounding extensive medical care for those who have short life expectancies.
- Medical teams should work closely with families as soon as trisomy is detected (ideally before birth) to make informed decisions about what is best for their baby moving forward. Discussions may include admission to a NICU, potential medical procedures, or even supportive care that protects the child from invasive procedures. Babies diagnosed with trisomy 13 or 18 before birth should, if possible, be born at a hospital that is equipped to offer timely, effective care that aligns with the parent’s decisions and goals.
- Medical professionals should be honest, transparent, and compassionate when supporting parents and caregivers of trisomy babies. Parents should be made aware of all treatment options available, and life-extending care should only be withheld if the parents decide to do so. For these cases, comfort care is a reasonable option that many loving parents choose for their child.
Support
Receiving a trisomy diagnosis for your little one can be devastating. You may face feelings of anger, frustration, hopelessness, or even depression on top of spending hours learning how to care for a medically fragile child. Without support, your own physical and mental health will suffer. Don’t be afraid to reach out and get the care you need as soon as you can. Rely on your medical team for resources meant to help parents of seriously ill children. There are also support groups and grief counseling resources that can make a huge difference in helping you feel calm and prepared for what’s to come.