After the Birth
Sadly, most babies born with full trisomy 18 or trisomy 13 are expected to have very short lives. However, almost 1 in 5 do survive 3 months with 1 in 10 living for at least 1 year. These babies are much more likely to have malformations of different organ systems including the heart and central nervous system, and may require extensive medical attention.
The birth experience may be stressful and many families choose to discuss potential decisions before the birth of their baby.
Discuss Potential Problems
After delivery some babies need resuscitation and oxygen before being able to breathe unaided, and this and other potential problems should be discussed beforehand. Parents may decide that strenuous resuscitation will not be appropriate, and that they would prefer to let nature take its course.
Where there are major life threatening problems and the future of the baby seems hopeless, it may not be right to provide the highest level of life saving skills, but the decision not to give intensive care to prolong the life of a very sick baby does not mean that loving care is withdrawn. The child can be kept comfortable and peaceful with much of the nursing care being provided by the parent or parents and supported by the medical staff.
Questions and Worries
Make a list and ask for a meeting with the Obstetrician, Neonatologist and Paediatrician before the birth to discuss all the questions and worries you have about your delivery and what will happen after the birth. If your baby dies you may be asked for permission for a post-mortem, and it is up to you to agree or refuse.
Most hospitals will be sensitive to the needs of parents who have had a prenatal diagnosis of trisomy 13/18, and will allocate a side room that will give the family privacy after the birth. If you have any concerns discuss them with your GP, and if they are not resolved you may wish to request a change of consultant or hospital.
When a baby dies