Post by Daniella on May 26, 2006 22:09:47 GMT
Support
It helps many parents to be able to talk over their feelings with others who have been through the same experience. The Down's Syndrome Association has branches and groups in most areas of the country. Getting in touch with them, when you feel ready to do so, could help you to sort out feelings about what it means to have a baby with Down’s syndrome.
Most parents have questions about Down’s syndrome and what having a baby with the condition will mean to them and their family. In this booklet we shall try to answer questions that parents most often ask. The Down's Syndrome Association has literature and information on almost every aspect of the condition, so if you would like more information, just contact us.
Could we have prevented our baby having Down’s syndrome?
It is important to remember that you are not to blame for your baby having Down’s syndrome. Nothing you did before or during pregnancy has caused it. It occurs in all races, in all social classes and in all countries throughout the world. It can happen to anyone.
Does it mean that any further children we might have will also have Down’s syndrome?
Standard Trisomy 21 is not hereditary. However, once you have had one baby with Down’s syndrome your 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’. When thinking about your next pregnancy it would be helpful to talk to a genetic counsellor who could talk things through with you in some detail.
What does the extra chromosome mean for our baby?
All people with Down’s syndrome share some certain physical characteristics, though not every child with the condition has every characteristic. Your baby will have inherited physical characteristics from both of you, just like any other of your children, as well as sharing some of the common signs of Down’s syndrome. Your baby is unique. Some parents wonder if there is a link between the number of these physical characteristics and the future development of their new baby. In fact, there is no way at this early stage of predicting the level of ability of your child.
The extra chromosome means that your baby will be slower to reach her milestones and will have a certain degree of learning difficulty, but most children with Down’s syndrome do learn to walk and talk, ride a bike and read and write, in fact to do most of the things other children do. It’s just that their development is usually delayed.
What are the common signs of Down’s syndrome?
Your baby may have looser muscles and joints than other babies. This will improve as she gets older.
She may have lower than average birth weight and put on weight at a slower pace than other babies. (Special weight charts are available for babies and children with Down’s syndrome from the National Office of the Association).
Babies with Down’s syndrome often have eyes that slant upward and outward. Their eyelids often have an extra fold of skin (epicanthic fold) which appears to exaggerate the slant. This does not mean that there is anything wrong with the eyes. They just look different.
The back of your babies’ head may be flatter than average.
Many babies with Down’s syndrome have a single crease which runs right across the palm of the hand. Doctors often look for this characteristic crease, as a sign that a baby may have Down’s syndrome. However, some babies who do not have Down’s syndrome also have a crease like this.
All babies are different from each other and the same is true of babies with Down’s syndrome. This means that in some babies the characteristic signs of Down’s syndrome are fairly easy to recognise soon after birth, whilst others may look and behave little differently from other babies. However, experienced doctors and midwives are usually very good at picking up subtle differences, which suggest that a blood test should be done to check the chromosomes.
Will our baby have health problems?
Chest and sinus problems[/b]
Babies and young children with Down’s syndrome tend to be prone to chest and sinus infections but, thanks to better medical knowledge and care, such infections are no longer as serious as they used to be.
Feeding problems
Some babies with Down’s syndrome seem to lack the strength and determination to feed in the early days. Some may be slow to sort out the complicated co-ordination necessary to suck, swallow and breathe at the same time and they splutter and choke a bit. These problems often settle down during the first two weeks. If you want to breast-feed, but find that your baby can’t cope in the early days it may well be that if you keep your milk going he will soon sort himself out and take to breast-feeding.
You may have chosen to bottle-feed your baby for whatever reason and many babies with Down’s syndrome find it easier to feed from the bottle. It will not harm your baby to have formula milk. The important thing is that you and your baby should be as contented as possible!
When you begin to feed your baby it is worth trying to hold her fairly upright to feed and check first that the tongue is not sticking to the roof of the mouth. For a baby to suckle and get adequate milk the nipple or teat must be ON the tongue (not under it). Specially adapted teats are available to help babies who have difficulty feeding.
Do not hurry the feed. Babies with Down’s syndrome often feed very slowly, so do not stop too quickly. Your baby may fall asleep at intervals. If this happens in the middle of a feed, try tickling his cheeks, chin and feet.
Temperature control
The body’s heat-regulating mechanism does not always work well in early life. It is therefore important that the baby’s bedroom is not cold (18°C is ideal), and there are no draughts. Overheating can be hazardous for all babies, however, and it is important that they do not get too hot through over-wrapping when indoors. Humidifying the air will help your baby to breathe more freely, too.
Skincare
Your baby’s skin may be very dry. Massage him with a little baby oil and put some in the bath water. A little moisturising cream, for example E45 cream, unperfumed cold ream or olive oil rubbed gently on the skin every day should prevent drying and crying. Keep an eye out for allergic reactions. Your doctor or pharmacist can help with alternatives. You may be able to obtain some creams on prescription.
Tongue control
You may need give your baby particular attention to help control her tongue. Playing games, pulling faces and making noises etc will assist your child to exercise face and tongue muscles and also help with early sounds and speech. Try to avoid a blocked nose, which would encourage open-mouth breathing and protruding tongue. Humidifying the air in the baby’s room will help to prevent a dry blocked nose. Making a game of pushing in the tongue over and over again will help!
How will having a baby with Down’s syndrome affect the rest of the family?
Having a baby with Down’s syndrome in the family will require a period of readjustment. You may feel under more pressure to do things with your baby to help her development than you would have felt with any other baby. Take time to get to know the baby as part of the family. Your baby with Down’s syndrome will have his own personality and characteristics just like your other children.
Will having a baby with Down’s syndrome in the family disrupt our marriage?
Research shows that there are no more marital difficulties experienced by parents of children with Down’s syndrome than by the rest of the population. In fact, when asked about the effect of having a child with Down’s syndrome in the family, parents often say it has brought them closer together.
It helps many parents to be able to talk over their feelings with others who have been through the same experience. The Down's Syndrome Association has branches and groups in most areas of the country. Getting in touch with them, when you feel ready to do so, could help you to sort out feelings about what it means to have a baby with Down’s syndrome.
Most parents have questions about Down’s syndrome and what having a baby with the condition will mean to them and their family. In this booklet we shall try to answer questions that parents most often ask. The Down's Syndrome Association has literature and information on almost every aspect of the condition, so if you would like more information, just contact us.
Could we have prevented our baby having Down’s syndrome?
It is important to remember that you are not to blame for your baby having Down’s syndrome. Nothing you did before or during pregnancy has caused it. It occurs in all races, in all social classes and in all countries throughout the world. It can happen to anyone.
Does it mean that any further children we might have will also have Down’s syndrome?
Standard Trisomy 21 is not hereditary. However, once you have had one baby with Down’s syndrome your 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’. When thinking about your next pregnancy it would be helpful to talk to a genetic counsellor who could talk things through with you in some detail.
What does the extra chromosome mean for our baby?
All people with Down’s syndrome share some certain physical characteristics, though not every child with the condition has every characteristic. Your baby will have inherited physical characteristics from both of you, just like any other of your children, as well as sharing some of the common signs of Down’s syndrome. Your baby is unique. Some parents wonder if there is a link between the number of these physical characteristics and the future development of their new baby. In fact, there is no way at this early stage of predicting the level of ability of your child.
The extra chromosome means that your baby will be slower to reach her milestones and will have a certain degree of learning difficulty, but most children with Down’s syndrome do learn to walk and talk, ride a bike and read and write, in fact to do most of the things other children do. It’s just that their development is usually delayed.
What are the common signs of Down’s syndrome?
Your baby may have looser muscles and joints than other babies. This will improve as she gets older.
She may have lower than average birth weight and put on weight at a slower pace than other babies. (Special weight charts are available for babies and children with Down’s syndrome from the National Office of the Association).
Babies with Down’s syndrome often have eyes that slant upward and outward. Their eyelids often have an extra fold of skin (epicanthic fold) which appears to exaggerate the slant. This does not mean that there is anything wrong with the eyes. They just look different.
The back of your babies’ head may be flatter than average.
Many babies with Down’s syndrome have a single crease which runs right across the palm of the hand. Doctors often look for this characteristic crease, as a sign that a baby may have Down’s syndrome. However, some babies who do not have Down’s syndrome also have a crease like this.
All babies are different from each other and the same is true of babies with Down’s syndrome. This means that in some babies the characteristic signs of Down’s syndrome are fairly easy to recognise soon after birth, whilst others may look and behave little differently from other babies. However, experienced doctors and midwives are usually very good at picking up subtle differences, which suggest that a blood test should be done to check the chromosomes.
Will our baby have health problems?
Chest and sinus problems[/b]
Babies and young children with Down’s syndrome tend to be prone to chest and sinus infections but, thanks to better medical knowledge and care, such infections are no longer as serious as they used to be.
Feeding problems
Some babies with Down’s syndrome seem to lack the strength and determination to feed in the early days. Some may be slow to sort out the complicated co-ordination necessary to suck, swallow and breathe at the same time and they splutter and choke a bit. These problems often settle down during the first two weeks. If you want to breast-feed, but find that your baby can’t cope in the early days it may well be that if you keep your milk going he will soon sort himself out and take to breast-feeding.
You may have chosen to bottle-feed your baby for whatever reason and many babies with Down’s syndrome find it easier to feed from the bottle. It will not harm your baby to have formula milk. The important thing is that you and your baby should be as contented as possible!
When you begin to feed your baby it is worth trying to hold her fairly upright to feed and check first that the tongue is not sticking to the roof of the mouth. For a baby to suckle and get adequate milk the nipple or teat must be ON the tongue (not under it). Specially adapted teats are available to help babies who have difficulty feeding.
Do not hurry the feed. Babies with Down’s syndrome often feed very slowly, so do not stop too quickly. Your baby may fall asleep at intervals. If this happens in the middle of a feed, try tickling his cheeks, chin and feet.
Temperature control
The body’s heat-regulating mechanism does not always work well in early life. It is therefore important that the baby’s bedroom is not cold (18°C is ideal), and there are no draughts. Overheating can be hazardous for all babies, however, and it is important that they do not get too hot through over-wrapping when indoors. Humidifying the air will help your baby to breathe more freely, too.
Skincare
Your baby’s skin may be very dry. Massage him with a little baby oil and put some in the bath water. A little moisturising cream, for example E45 cream, unperfumed cold ream or olive oil rubbed gently on the skin every day should prevent drying and crying. Keep an eye out for allergic reactions. Your doctor or pharmacist can help with alternatives. You may be able to obtain some creams on prescription.
Tongue control
You may need give your baby particular attention to help control her tongue. Playing games, pulling faces and making noises etc will assist your child to exercise face and tongue muscles and also help with early sounds and speech. Try to avoid a blocked nose, which would encourage open-mouth breathing and protruding tongue. Humidifying the air in the baby’s room will help to prevent a dry blocked nose. Making a game of pushing in the tongue over and over again will help!
How will having a baby with Down’s syndrome affect the rest of the family?
Having a baby with Down’s syndrome in the family will require a period of readjustment. You may feel under more pressure to do things with your baby to help her development than you would have felt with any other baby. Take time to get to know the baby as part of the family. Your baby with Down’s syndrome will have his own personality and characteristics just like your other children.
Will having a baby with Down’s syndrome in the family disrupt our marriage?
Research shows that there are no more marital difficulties experienced by parents of children with Down’s syndrome than by the rest of the population. In fact, when asked about the effect of having a child with Down’s syndrome in the family, parents often say it has brought them closer together.