Every family is unique. What may be right for one child or family may not be right for another and parents can use these shared memories as a basis for discussion between themselves and their medical advisers.
SOFT does not recommend particular methods of treatment, and new treatments must never be started or existing treatment changed without consulting your doctors. SOFT does not represent any political or religious groups.
Seizures may describe frequent jitteriness lasting seconds or mild fits which cause the limbs to twitch. These may do little more than startle the baby, occasionally causing crying and tend to happen more often when thechild is going into or coming out of sleep. They are called myoclonic jerks and are caused by an excess of electrical activity in the brain.
Kidney defects make babies prone to urinary infections and these should be suspected if the baby develops a fever or other unexplained symptoms. Recurrent urine and kidney infections may need long term antibiotic therapy although they can eventually lead to renal failure.
Physiotherapy and gentle massage can begin as soon as baby is well enough in hospital or comes home. Babies with trisomy 13 and 18 clench their fists in a characteristic way and a physiotherapist can demonstrate the correct way to give the baby gentle massage and stretching exercises.
Physiotherapists can show parents how to stimulate their babies. To aid eye development and co-ordination silver paper or shiny bells can be moved slowly across in front of baby for the infant to 'track'. Mobiles are beautiful to watch and music or bells are interesting to listen to.
Babies with trisomy 18 may be sensitive to changes of temperature and can become distressed in hot weather.
Heart defects affect about 80% of babies with trisomy 13, 90% of babies with trisomy 18 and may be mild or life threatening.
Chromosome defects can result in the lids not developing. A baby will be unable to see when the eyelids completely cover the eyes, or if the lids are partially separated and vision will be restricted to looking in one direction only.
No two people react in exactly the same way to the death of a loved one,or to the diagnosis that their baby is going to be anything but perfect. Parents want their child to be healthy and the knowledge that a baby hasa serious chromosome defect is devastating.
Parents worry about the health of future children, and another pregnancy is an anxious as well as happy time. There is no right time to get pregnant and for some people healing and the return of confidence comes much sooner than for others. Parents must decide according to their own individual circumstances.
SOFT would like to acknowledge everybody who contributed to the publication of this booklet, especially: