Parenting Special Situations - Part Three

The Down Syndrome Baby -- A Special Kind Of Parenting

As a parent of a Downs syndrome baby, you continue to realize that a child with special needs exacts form you a special kind of parenting. For special-needs children the principle of mutual giving really shines. As this child develops special skills, you develop special skills. They continue to stretch you while also bringing out the best in you. Here are the most common concerns parents have about the most common chromosomal abnormality.

How Frequent

Dow syndrome (formerly called mongolism), named after Dr. Langdon Down, who described these children in 1866, occurs in one out of seven hundred birth. The chance of having a Down syndrome baby increases with the age of the mother.

* women under age 25 -- 1 in 2,000 births
* women at age 30 -- 1 in 1,300 births
* women at age 35 -- 1 in 400 births
* women at age 40 -- 1 in 90 births
* women at age 45 -- 1 in 32 births
* women at age 50 -- 1 in 8 births

Depending on how they are presented, these figures can be scary. If a doctor says to a mother, "At age thirty-five you have five times and chance of having a Down syndrome baby that you did at age twenty," that would scare many senior mothers from conceiving. Here's how to present the risk factors to help alleviate too much concerns to those who ask. At age twenty you had a 99.95 percent chance of not delivering a baby with Down syndrome; at age thirty-five your chances are 99.75 percent. Doesn't that figure sound more reassuring? This is why the opinion is that the "thirty-five-year-old scare" is too young; forty-five perhaps" Even at age forty-five you have a 97 percent chance of delivering a baby without Down syndrome. So for mothers of later childbearing age, these figures are looking up.

Because of these risk factors, it is unwarranted to scare a thirty-five year-old mother into prenatal diagnostic tests (either amniocentesis or chorionic villi sampling). Weight these facts: At age thirty-five your statistical chance of delivering a Down syndrome baby is 0.25 percent. However, the risk of damage to a normal preborn baby during the tests may be around 1 percent. Whether or not you have prenatal diagnostic testing is an individual judgment call between you and your doctor.

Why Down Syndrome Occurs

Normally a sperm and an egg each contain twenty-three chromosomes. At fertilization they combine to form a cell with forty-six chromosomes. Sperm and egg cells undergo normal divisions, called meiosis, producing exact copies of the original cell. Sometimes by chance, during meiosis the division is unequal. One cell gets one less chromosome and dies. The other cell gets one extra chromosome and lives. If this cell joins with a sperm (or egg), the resulting fertilized egg contains forty-seven chromosomes. In the case of Down syndrome the extra chromosome is number 21, so the genetic name for this syndrome is trisomy 21, that is, the cells have three number-21 chromosome. There are other trisomies, which usually end in miscarriage or early infant death. Why an extra chromosome causes the features of Down syndrome is unknown. This unequal division of cells is call nondisjunction. It occurs by chance and accounts for 95 percent of the chromosome
abnormalities in Down syndrome.

A rare genetic form of this syndrome (occurring in around 2-3 percent of these babies) happens by the mechanism of translocation. In this situation one of the number-21 chromosomes parts company with its mate and attaches to another chromosome, even the appearance of the cell's having only forty-five chromosomes. However, the person is normal because he or she has all the genetic material of forty-six chromosomes but actually has three number-21 chromosomes. To confirm which type of chromosome abnormality your baby has, a geneticist analyzes your baby's chromosomes in a blood sample. The type of chromosomal abnormality, either nondisjunction or translocation, can be ascertained by looking at the chromosome alignment in your bay's blood cells. While most translocation abnormalities occur by chance, occasionally one parent is a carrier of cells that my contain a translocated number-21 chromosome and therefore has an increased risk of having more Down syndrome babies. If analysis of baby's blood reveals a translocation of abnormality, analysis of the parents' blood will reveal whether this happened by chance or whether a parent is a carrier and therefore has a risk of future babies inheriting this abnormality.

Another type of Down syndrome is called mosaicism, meaning some of the baby's cells contain the normal number of chromosomes, and others have an extra number 21. This is why many cells of your baby's blood are analyzed. Sometimes, but not always, a baby with mosaic Down syndrome is less affected.

Why Us?

Chromosomal abnormalities happen by chance. You did not cause this by anything you did or did not do during pregnancy. A woman is born with a certain number of eggs and does not produce new ones during her age. The longer an egg lives, like any tissue, the more likely something is to go wrong. Why this happens in sperm is more of a mystery. New sperm cells are continuously being made. There is no such little creature as an old sperm. For some unknown reason the risk of nondisjunction occurring in sperm increases in men over fifty.
Possible Medical Problems

Down syndrome babies are prone to a number of potential medical difficulties. Among them are these.

* Heart defects: Around 40 percent of Down syndrome babies are born with an abnormally developed heart. Most of these conditions are now surgically correctable.

* Intestinal defects: Around 4 percent of these babies are born with a blockage in the upper intestine, called duodenal atresia. This must be surgically corrected to allow food to pass.

* Hypothyroidism: This occurs in around 10 percent of children with Down syndrome. Because the chance of this condition increases with age and may not be apparent on examination, it is wise to check your baby's thyroid function at least every two years.

* Vision problems: Many children with Down syndrome develop a variety of eye problems, such as crossed eyes, nearsightedness, farsightedness, and cataracts.

* Hearing problems: Around 50 percent of these children have varying degrees of hearing problems. Their increased susceptibility to middle ear infections contributes to this.

* Instability of the vertebrae: In approximately 10 percent of these babies the first two vertebrae, where the spinal column joins the neck, are unstable (called atlantooccipital instability). Babies with this condition are prone to spinal cord injuries from a jolt during contact sports. All Down syndrome children should have x-rays of the upper spine before being allowed to participate in contact sports.

* More colds: Down syndrome babies have reduced immunity, which together with small nasal passages makes them more prone to sinus and ear infection.

How Smart Are These Babies?

Children with Down syndrome have less-than average intellectual functioning; some are more impaired than others. With early intervention and special education many of these children join mainstream classes in school. Language lags are the most noticeable of the impairments. Because they do not go through motor milestones so quickly, it's like watching the remarkable unfolding of development in slow motion. Because parents cannot take milestones for granted, infant development takes on an added element of anticipation and excitement.

Why they may lack academically, these babies make up for socially. Like all children, babies with Down syndrome have good and bad days. But, in general, these babies are affectionate and just plain happy. Many share constant hugs and kisses and radiate a generally carefree attitude. Their giving and caring attitudes are so contagious that those around these babies wonder who is really normal. There is indeed an upside to babies with Down syndrome.
How Smart Are These Babies?

Children with Down syndrome have less-than average intellectual functioning; some are more impaired than others. With early intervention and special education many of these children join mainstream classes in school. Language lags are the most noticeable of the impairments. Because they do not go through motor milestones so quickly, it's like watching the remarkable unfolding of development in slow motion. Because parents cannot take milestones for granted, infant development takes on an added element of anticipation and excitement.

Why they may lack academically, these babies make up for socially. Like all children, babies with Down syndrome have good and bad days. But, in general, these babies are affectionate and just plain happy. Many share constant hugs and kisses and radiate a generally carefree attitude. Their giving and caring attitudes are so contagious that those around these babies wonder who is really normal. There is indeed an upside to babies with Down syndrome.

Parenting These Special Babies

With these babies the attachment style of parenting really shines. It gives you the ability to read the special needs of your baby, almost like having a sixth sense. You will need a deeper sense of intuition and observation because your baby's cues may initially not be so easy to read. (see my article "Breast Feeding Special Babies in Special Circumstances" for practical attachment suggestions.)

Weighing how your baby looks and acts in relation to other babies will tear you apart. As you come to terms with parenting a special-needs baby, every time you see a non-Down syndrome baby you might think "My baby doesn't look kike that or feel like that." In reality, you are filling your mind with the gut-wrenching feelings that your baby was less valuable than other babies. The real breakthrough will come when you are able to focus on the special qualities of your baby rather than on what he/she is missing compared with other babies.

Find out what resources, such as early intervention programs, are available within your community. Consider joining a Down syndrome support group if there is one in your area. You will be amazed at the practical suggestions and insights from parents who have gone through situations similar to yours and have coped and thrived and are able to share their experiences. One mother wrote: "Your baby will bring flashes of color to your life that you never knew existed." Some parents plunge right into as many support groups and community resources as they can and feel comfortable immersing themselves in learning as much as possible about parenting their child with special needs. Other parents feel more comfortable choosing only a few support resources, deciding it is better for their own family situation if they do not focus their entire lives on Down syndrome but, rather, incorporate their special-needs baby into the mainstream of family life. They feel this approach emphasizes more of the individuality of their special baby. For example, when your baby rubes his palm across your cheek, the caress of his soft touchy hand will feel unlike any touch you have ever felt. Special-needs babies can bring special gifts to the family. Experience has shown parents who practice attachment parenting get in harmony with their special-needs baby and develop an incredible sensitivity toward them. This sensitivity carries over into their social, marital, and professional lives. This sensitivity is also contagious to siblings. Parenting special babies is a family affair. You will notice that when siblings pitch in and care for their special-needs brother or sister, it mellows out their usual egocentric and selfish natures., enabling them to become giving, nurturing, and sensitive children. In general, a special-needs baby can elevate the sensitivity level of the whole family.

On the other hand, parenting a special-needs baby can cause marital stress. It is necessary to keep some balance in your baby care. Some mothers focus totally on the special needs of the baby and withdraw from the needs of other members of the family. It is natural for a mother of a special-needs baby to feel, "My baby needs me so much; my husband is a big boy and can take care of himself." Each spouse needs to care for the other so that they can better care for their baby.

A word of advice for friends and relatives: The worst thing you can do is shower sympathy on the parents of a baby with Down syndrome. Statements like "I'm sorry for you . . ." devalue the baby -- and the parents. After all, mother delivered a baby, perhaps not "normal" by our standards, but a unique person who will make his or her own contribution to that family and to society. A very uplifting statement that was said by a wise and experienced grandmother is "My wish is for you to become excited about your special baby."

There will be more articles on infants, breast or bottle feeding and other related topics to follow. So please keep an eye out for more of my articles.