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Advice For New Parents

If you have recently found out that your child has Down Syndrome, you’ll be experiencing a variety of emotions. To help you, we have tried to answer some of the more commonly asked questions. Rest assured you’re not alone and we are here to offer support. If you would like to contact someone for more advice, please don’t hesitate to get in touch.

Could we have prevented our baby having Down syndrome?

  • No. Nothing either of you have done has contributed to this condition. Nobody is to blame for your child having Down syndrome. Down syndrome is a genetic disorder (i.e. something you are born with which is present in the baby at the moment of conception) caused by the presence of an extra chromosome.
  • Down syndrome occurs in all races, in all social classes, in all countries throughout the world and is born to women of any age. It is important to remember right from the start that nobody is to blame.
  • Standard Trisomy 21 is not hereditary; however the chances of having another child with the condition are increased.
  • Overall this chance is between 1 in 100 and 1 in 200, which is considerably less than the chance of say having ‘twins out of the blue’.

Will our baby have health problems?

It is important to remember that like any child your baby is an individual who will suffer health problems to a greater or lesser degree than the next child. There are no specific health problems that any child should have however there are more common areas that children with Down syndrome are susceptible to:

Chest and sinus problems

Babies and young children with Down syndrome tend to be more prone to chest and sinus infections, but thanks to better knowledge and care, such infections are no longer serious.

Feeding Problems

Some babies with Down syndrome seem to lack the strength and determination to feed in the early days. Some may be slow to sort out the complicated coordination necessary to suck, swallow and breathe at the same time, and hence they splutter and choke a bit.

Although not always the case many babies with Down syndrome find it easier to bottle feed and it will not harm your baby to have formula milk. The important thing is that you and your baby are as contented as possible.

When you begin to feed your baby it is worth trying to hold them fairly upright to feed and to check that their tongue is not sticking to the roof of their mouth.
Do not hurry the feed. Babies with Down syndrome often feed very slowly, so do not stop too quickly.

Heart problems

About 1 in 3 children born with Down syndrome has a heart defect. Some are quite minor such as heart murmurs; some defects are severe and require medication and/or surgery.

Your baby’s heart will be one of the first things checked by doctors at your first neonatal examination and if there is any doubt about a heart defect being present further tests will be run. The Doctors will continue to check for heart defects throughout the first year.

Intestinal problems

Malformations of the gastrointestinal tract are present in about 5 – 7% of children with Down syndrome.

The most common malformation is a narrowed, obstructed duodenum (the part of the intestine into which the stomach empties). This disorder, called duodenal atresia, interferes with the baby’s milk or formula leaving the stomach and entering the intestine for digestion.

The baby often vomits forcibly after feeding, and cannot gain weight appropriately until the defect is repaired.

Skin care

Your baby’s skin may be very dry. Massage them with a little baby oil and put some in the bath water. A little moisturising cream such as E45 cream rubbed gently on the skin every day should prevent drying and crying.

Sight, hearing and speech

About half of all Down syndrome children need glasses. Your child may have crossed eyes or have problems seeing things that are near or far away.Your child may have ear infections more often. Also, most children with Down syndrome have some amount of hearing loss.

If your child is hard of hearing, he may have problems talking and understanding things that people say to him.

What does the future hold for our child?

  • Children with any disability these days are being educated like all children to be part of and to contribute to their local community. Children with Down syndrome can grow and live long and fulfilled lives.
  • Provided they are allowed the opportunities they need to develop self-help skills and independence, people with Down syndrome can live a full and active life and have successful and happy relationships, facing many of the challenges we all encounter, school, further education, work and a home of one’s own.
  • More than ever, children with Down syndrome are now being integrated successfully into mainstream schools.

One parent’s view

  • “When Adam was diagnosed our world was turned upside down and went from being one of the happiest days of our lives to one of the saddest. If we had known then just how much Adam was to enrich our lives and the lives of so many others, I’m sure we would not have felt this way. Adam is now a key and well respected member of his mainstream school and is always the centre of attention wherever he may be.”

Find out about the “Just Kids” book, and see how to request the New Parents Support Pack.

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