Caring for Babies with Trisomy 18

Husband and wife holding new born child

Pregnancy is usually a happy time, but for some mothers, it can bring heartbreak when the baby is diagnosed with a life-limiting condition. Babies with trisomy 18 may die in-utero or survive briefly after birth.

Trisomy 18, also known as Edward’s Syndrome, is a serious genetic disability caused by the baby being given three chromosome 18s during conception instead of two. Unlike many other genetic conditions, it isn’t inherited from either parent and occurs purely by chance.

About Trisomy 18

Trisomy 18 occurs in one in every 2,500 pregnancies and one in every 6,000 live births in the U.S. It is detectable via non-invasive prenatal blood testing. A blood sample taken from the mother at 10-12 weeks gestation can identify whether a fetus has the condition because fetal DNA can be found in maternal blood. Knowing whether the baby has Trisomy 18 in advance can help prepare the family for the possibility of stillbirth or the baby’s medical care after birth.

Sadly, most babies who are diagnosed with it will die in-utero. Those that survive may only live a few hours or days and will need support from medical professionals. If the baby only has a partial trisomy and not a whole extra copy of the chromosome, they will have a less severe presentation and may live up to a year, or in rare cases, into early adulthood.  In many cases of those who grow into adulthood, they require palliative care services for children in states like Indiana.

Services for Affected Families

Palliative care services in Indiana can provide emotional, medical and spiritual support from local families who are having a baby with this condition or any other life-limiting illness. They can offer:

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1. Counseling to help them come to terms with the diagnosis

2. Pastoral care

3. Physical therapy or occupational therapy for the child, if appropriate

4. Help with feeding tubes

5. Respite care to give the family a break

6. Help with household chores so the parents can spend more time with their child

7. In home medical support

8. In-patient hospice care

Trisomy 18 devastates thousands of families each year, but hospice care can help people cope with the diagnosis and get the most out of their precious time together.