Problems associated with these syndromes 

Babies with trisomy 13/18 often have a low birth weight, low set ears, heart and eye defects, and unusual palm and fingertip patterns. The following problems may be present: abdominal defects (omphalocele); cleft lip, and palate; back of head enlarged (occiput); clenched fists, and overlapping index fingers; club/rocker bottomed feet; spina bifida; spine defect (meningomyelocele); defects of the scalp, diaphragm, lungs, kidneys, and ureter; small mouth and jaw; joint contractions (arthrogryposis).

Caring For A Baby With Trisomy 13/18 At Home

Some babies require the facilities of the Special Care Baby Unit only until breathing and feeding are established. These babies can then transferred to a ‘baby ward’, and parents may have the option of taking a baby home when hospital care is not required. Specialised support should be arranged together with a structured care plan to prepare a family for problems that may arise. A care plan must be flexible to the changing needs of the baby or the family. 

Children's Hospices

If there is a Children’s Hospice in your area, they may be able to provided ‘home from home support’. Families taking a baby home should be informed about physiotherapy, respite and shared care, and state allowances.

Shared Care Fostering and Adoption

Although survival into childhood is rare, you could be faced with caring 
for a child with severe developmental delay. Other options you may consider could include shared care, fostering, or adoption. 

Apnoea Spells

Apnoea is breath holding and happens more frequently in early infancy, especially when a baby has trisomy 13. The baby stops breathing without warning and becomes limp and blue. Breathing usually starts again after a few moments that will seem like a lifetime. Parents may consider the use of breathing monitors, and learning simple resuscitation.
Apnoea has been described as 'the brain forgetting to tell the baby to breathe' and slight stimulation or even resuscitation may be needed. A pediatrician will advise whether to have an apnea monitor at home, and what to do in an emergency.

Constipation

Babies with trisomy 13 and 18 may be prone to constipation and discomfort can be relieved by diet, fluids, or medication depending on the cause and severity. Midwives may suggest adding a little (brown) sugar to the feed as a temporary measure for the very young baby, but suppositories may be needed for chronic constipation. Always seek the advice of the baby's doctor or health visitor.

The SOFT UK booklet YOUR BABY explores the practical issues of caring for a baby with 13/18 and is free of charge to families.