Your baby has Down Syndrome, what’s happening, what are you suppose to do?

Big, practical suggestions for a mother or a father with a Down Syndrome baby.

Practical suggestions for mothers and fathers with a baby with Down Syndrome – like pay particular attention to Vitmin A levels prior to vaccinations, spread vaccintaions out, don’t let stress and depression retard the development of your baby, overcoming suckling problems of infants on the breast, and much more information on babies with Down Syndrome.

Read on to find out much more – the Down Syndrome baby facts, others wont necessarily tell you.

What to expect after your baby with Down Syndrome is born:

Here is a very common Question relating to new born Down Syndrome babies:

Dear Donald,

Hope everything is fine.

The baby is facing some problem in sucking . Please let me know what is to be done.

Thanks & regards

Our Answer to this perplexing question on sucking behaviour of Down Syndrome babies:

Hypotonia, Stress, Depression and an extra muscle, can all contribute to poor sucking in a Down Syndrome baby.

Hi,
Sucking is a common problem for Down Syndrome babies – that’s why many Down Syndrome babies end up being bottle fed

The poor suckling behavior is partly the hypotonia ( low muscle tone ) affecting the mouth and it’s ability to keep sucking.

To get round this effect of hypotonia on Down Syndrome babies, buy a breast pump, wife extracts her breast milk, then places the breast milk in baby bottle and feeds the baby that way. Obviously everything must be clean and sterile.

With Jacob as a baby, we persisted with the breast feeding and used the bottle as a top up for after the breast feeds, or to feed him if he was too tired to breast feed from sucking.

We also believe that as babies can pick up on the stress and depression of the mother and father, that Down Syndrome babies are at particular risk of poor sucking and feeding, as normally all the stress of finding out the baby has Down Syndrome is relayed through the mother and or father to the baby, within hours or days after the baby is born.

Such stress often impacts on the babies ability to suck and feed, as well as on the mother’s ability to produce breast milk.

Another factor which affects the sucking behavior of Down Syndrome babies may also be an extra muscle in the mouth. Having the extra muscle means it may be a bit harder for a Down Syndrome baby to control the sucking action.

So, what is to be done if the problems associated with having a Down Syndrome baby impact too severely on the breast feeding of the baby?

Obviously keeping the baby nourished to prevent health problems now and in the future is vitally important.

A starving baby will become unhealthy very quickly and death may follow – babies are very fragile, more so Down Syndrome babies.

So if not enough breast milk can be obtained, the normal course is then to obtainsuitable infant formula, preferrably those fortified with omegas – dha etc. – for brain development.  The last thing you want is to chose a formula that does not protect or enhance the intellectual abilities of a baby with Down Syndrome.

Make sure directions are followed exactly to manufacturers specifications to prevent ill health.

Another option, which is not so widely practised nowadays, is the use of a wet nurse – a lady who is lactating and is hired to breast feed and or provide breast milk for the baby – normally for about 12 months.

If this option is chosen, great care must be exercised as to the health and life style of the wet nurse, as any diseases she may be carrying may be passed onto the baby, and Down Syndrome babies are at particular risk of catching infections.

Also, you would need to see how well the wet nurse takes to the baby with Down Syndrome – you want the wet nurse to display much affection and love and to stimulate the baby.

Now, onto the other issues related to having a Down Syndrome baby:

So Many Appointments and Investigations so Soon, when your baby has Down Syndrome

Remember Those Necessary Vacinations, particularly as babies with Down Syndrome generally have a lowered immune system and remember that antibiotics can be used in a preventative fashion for adults and kids and possibly babies with Down Syndrome.

If you have a Down Syndrome baby, you probably are already on the medical merry go round of appointments, or you should be if you’re not:

Having/had the heart echo-cardiogrammed within a few days of the birth (which is an absolute must as no one can tell with accuracy who urgently needs the heart and valve operations – often more than one operation is required – around 50% of Down Syndrome babies may have a life threatening heart/valve defect at birth), hearingsubstantially investigated using machines while your baby sleeps, eye tests requiring drops to dilate the pupils, the six monthly leukemia checks and blood tests which are a must for Down Syndrome babies and kids.

Then there are the trips to the doctor for things like the MANY MANY respiratory infections your baby may come down with.

The emergency trips to the hospital – we had a few with Jacob, all were upper respiratory infections that had become life threatening. Another very common complaint for Down Syndrome babies and infants.

With the respiratory infections comes ear infections, with ear infections comes glue ear, with glue ear comes very distorted hearing, with very distorted hearing comesspeech problems and delays. So with every respiratory infection which causes a runny nose it is important to get the ears checked by the speech therapist and their machine or by a doctor and their machine.

The physiotherapist, occupational therapist and speech therapist appointments.

Vaccination appointments (and separating the vacinations out over several weeks so as not to significantly affect the metabolic balance in the blood stream! For example, measles one fortnight, tetanus the next…I know of three parents whose kids came down with autism following routine vaccinations, two had Down Syndrome babies / young kids, all three blamed vaccinations.

The theory runs that the multiple vacinations (several vacinations at the same time) in one go significantly depletes vitamin A, which in turn can have a catastrophic effect with the outcome sometimes being autism – Before any vacination with Jacob we also increase his Vitmain A dose.).

The Vitamin A thing is really important with Down Syndrome babies, as they may already not have enough vitamin A, which would, according to the theory, make Down Syndrome babies more susceptible to coming down with autism following routine vaccinations.

Also, the extra vacinations that you didn’t worry about with your other babies and infants, like chicken pox and pneumonia.   With Down Syndrome babies and young kids, getting the pneumonia vaccine can be a life saving exercise, given all the respiratory infections they are prone to.

Your entire life suddenly revolves around baby appointments, one after another – plus I would add, time spent sorting out the paperwar when someone, such as a clerk, looses something. This is all part and parcel of having a baby with Down Syndrome – however, some of the Down Syndrome babies are lucky and have good health, hmmm.

Just looking at what we went through above makes me shudder, how on earth was it possible to do all that and stay sane? All the time lost in waiting rooms and the travelling time to and from everything. The petrol in running to and from appointments. The mind still boggles at it all, but I expect you will survive just as we did/do.

The good news though is that Targeted Nutrient Intervention for babies with Down Syndrome ( tni or vitamin / mineral / amino acid treatment (eg, we now use Hivita Liqui Vita to provide Jacob with his TNI treatment )) can improve fine muscle tone in some, reduces the number of illnesses and improves the ability to fight off disease when an infection starts.

As one other Targeted Nutrient Intervention parent said to us… Imagine how Jacob would have been without the Targeted Nutrient Intervention … we cant be sure, but after having the blood tests we can honestly say we think he would have been less healthy.

Antibiotics appear to be offering an alternative treatment to reduce the number and severity of coughs and colds in babies with Down Syndrome.  Perhaps a better solution to the vitamin approach.

Our Down Syndrome paediatric specialist placed Jacob on the Bactrim antibiotic at half the recommended dose. He informed us Jacob was to be kept on this dosage over the higher risk period ( for our climate that turned out to be early autumn to late spring ) whether Jacob was sick or not.

The effect of this Down Syndrome treatment was immediate and obvious, Jacob’s health massively improved, with coughs and colds and runny noises massively reduced. The good doctor also said to up the dose of the anitbiotic to full strength dose should he catch the coughs and colds etc. If I could, politely of course, I would yell this out to you. It made such a big difference. Took so much misery out of Jacob’s life.

On this note, I recently found out that growth in a kid stops when they are sick. This is one way anthropologists and others can determine how sickly a person was as a kid – by checking the bones for periods of halted growth.

Why I include this interesting fact is because our kids and babies with Down Syndrome can be sick for long periods of time almost from birth, which means their growth – to some extent, may be being stunted by illness as well as by their genetic makeup.

So it may be important to keep Down Syndrome babies healthy to allow them to grow better.

One important consideration about placing your baby or toddler with Down Syndrome into day care, concerns the inevitable increase in illnesses that accompanies such a decision.

Babies in day care can come down with up to around three times the number of illnesses as babies not attending day care.

Jacob has spent much time ill, presumably as a result of attending day care.

The upside of this, however, is that it is suppose to improve their immune systems and make them healthier as older kids and adults. It may also help the babies speech and social development, if they have Down Syndrome.

Obviously, you may like to talk about the day care option with your doctor first.

For us, we believed the advantages were too many to overlook, so Jacob went to day care.

As an update, Jacob left day care in 2005 and is now attending normal school.