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Rabbi Goldstock

  For a lifetime, on one level or another, we dream of the day we will marry and have children.
  We anticipate the birth of our children, during the nine months of a pregnancy, with great expectation.
  Babies conceived in love are expected to be perfect and cute and well lovable. And when they do not live up to our expectations by being born perfect then our initial reaction is or often is disappointment, depression, and rejection.
  The reaction to this kind of disappointment can be so overwhelming that it can lead to real depression and that in turn can and often has led to the rejection of the infant.
  These challenges are so powerful that the marriage itself can be and often is seriously jeopardized. Once the news is known to be factual the marital relationship will have already been altered even though the partners don’t realize how significantly that is.
  Most of the messages being given at the time of birth are negative and rejectionist. This negativity comes from doctors, rabbis, relatives, and friends. The source of this rejectionist attitude stems from ignorance and historical misconceptions as to what has just occurred.
  It is important that if this is attitude at birth is to change then we must begin offering alternatives to the professionals who are offering advice. Next we must offer information to young people prior to marriage so that they will have discussed as many of the possibilities that can occur in a marriage and they will be better prepared to confront these challenges.
A positive approach is paramount to success. Unfortunately there is little to feel positive about upon hearing that your baby, whom you have had such high expectations for so long, has just been born with Down syndrome.
  What is Down syndrome? How will it affect our lives and the lives of the professionals, relatives, and friends who are offering such a liberal dose of advice.
  The immediate reaction is to recoil into a state of denial. You will ask for a chromosomal study to verify the facts.   And since they take several days to complete you will read everything available on the subject, you will contact every maven in the field, and when the chromosomal studies come back positive you will ask for the medical staff to repeat the study just to be sure that they have not made what will seem to you to be a perfectly plausible mistake.
  This all very natural and normal considering you have not been awaiting the birth of a child born with Down syndrome. You have been anticipating a normal, typical baby.
  What can you expect from the life of a child who has Down syndrome?
   According to the Down Syndrome Congress:
Only one or two percent of persons born with Down syndrome have uncorrectable heart defects at birth.
Less than five percent of persons born with Down syndrome have severe to profound retardation.
  The majority of people born with Down syndrome are on the border of mild to moderate retardation and some are even demonstrating normal IQ scores today.
  The average reading level for persons with Down syndrome is the third grade level and many are reading at the 6 – 12 grade levels today.
  The vast majority of adults with Down syndrome today can be expected to live a productive totally independent or at the least semi-independent life.
Many of the populace with Down syndrome enter the work force with today’s supported employment programs and some are completely employed.
  Therapies can all be successfully provided at home while living at home with the family.
  However, because of the initial counseling provided to families, in the hospital, by biased medical professionals and clergy as well as prevailing negative family opinion many infants are at risk for not taking their rightful place at home.
  Today specialists, such as cardiologists and surgeons who at one time were reluctant to perform surgeries on children with Down syndrome now do so regularly after recognizing that people with Down syndrome can live meaningful and productive lives. They deserve to be treated the same way as other children who do not have an extra chromosome.
  Dr. Pueschel, a leader in the introduction of positive approaches to dealing with Down syndrome, suggests: “it is paramount that the new generation of professionals strive toward a set of goals emphasizing that:
The health of the patient will be their first consideration.
They will maintain the utmost respect for human life, from the time of conception.
  They will practice their profession with conscience and dignity, and
  They pledge themselves to consecrate their lives to the service of humanity.
  If these are the pillars of medical practice, then children born with Down syndrome shall not suffer; they will be offered a status that respects their rights as citizens and preserves their human dignity…IBID
  A human society should demonstrate it’s concern by providing the emotional, financial, educational, and other supports needed by families courageously refusing to let quality overshadow equality. A society’s passion for life must be joined with compassion for the living…IBID
The parent facing the probability of a life with a child who has trisomy 21 (another name for Down syndrome) or any other disability for that matter, is so disturbing and emotionally draining that any offer of counsel should and must proceed with caution, sensitivity, and insight into the heart of the patient-parent.
  At that moment of exquisite vulnerability the physician who has never had to receive this news is most likely not going to make a very positive or optimistic presentation. He may understand Down syndrome as a medical diagnosis, however, as a parental advisor of a new parent of an infant born with Down syndrome s/he is lacking.
There exists a potential for total failure. I am defining failure at this post partum explanation as a loss of hope and possibility.
  Therefore counseling should proceed with caution, compassion, and concern for parity. That is the parents should be presented with a positive and optimistic approach. An effort should be made to locate others who have successfully negotiated this course in the past and who continue to increase awareness with dignity, insight, and sensitivity.
  What is the need to beat the issue? The parents? Why are professionals so firm in their resolve to present the worst-case scenario? What is this bias? Where did it come from? Aren’t the parents entitled to hear something encouraging? Who or what conferred the right of the physician to predict the future? What allows a doctor to suggest dividing a family? And why does the future always seem so bleak?
WHAT EXACTLY IS Down syndrome? How did my baby get it?
  Down syndrome also known as Trisomy 21. The most consistent verifiable characteristic of the syndrome is the presence of an extra chromosome at the 21st pair of chromosomes. This happens when either the egg or the sperm contribute an extra chromosome;
Every person has 22 pair of chromosomes that originate from each parent. These 44 chromosomes combine to become a person. There is a 23d pair known as autosomes that determines the gender of the person. Thus there are 46 total chromosomes in a typical human being, or a total of 23 full pair.
  Anyone capable of conceiving has the potential to have a child with Down syndrome.
  One in every nine hundred births results in a child born with Down syndrome. There are approximately five thousand births annually in the United States.
  It is not true that most babies born with Down syndrome are born to women over the age of forty. Eighty percent of babies born are born to women under the age of thirty-five. It is interesting however to note that the incidence of births of children born with Down syndrome increases with the age of the parents. (Both parents)
  Interestingly fifteen percent of women who are pregnant are likely to miscarry and over half of those miscarriages are caused by chromosomal problems. Trisomy defects such as T21 account for a quarter of those miscarriages.
Based upon this research data provided by the NDSS (National Down Syndrome Society) clearly four percent of all pregnancies contain an extra chromosome.
  Twenty to twenty five percent of children conceived who have Down syndrome survive past birth and are not miscarried.
  A syndrome is a complex of symptoms that when present the majority of the time allow physicians to make a diagnosis as to the presence of Down syndrome. In order to diagnose the presence of Down syndrome it is necessary to identify all significant differences, however, there are also health risks that must be noted and corrected.
  People with Down syndrome, besides the usual symptoms are also subject to infections, respiratory problems and immature digestive tracts. Almost all are correctable pharmacologically and surgically however.
There are over 900 symptoms of Down syndrome that are not necessarily present in all people born with Downs however there is a list of the basic 8 symptoms that are almost always present and yet even these are not present all the time.
  The simian crease which is a deep line running through the center of the palm and although this is a well-known characteristic it is not always present. And it is also present in children and adults who do not have Down syndrome.
  Muscle hypotonia or low muscle tone and is almost always present.
  Low nasal bridge. This is usually accompanied by a small nose and eye openings that slant up giving an almost oriental appearance (oblique palpebral fissures) with a flat face and skin folds on the inner corner of the eye. Very common observable features.
  Underdeveloped ear known as dysplastic ear varies widely in children with Down syndrome.
  Hips are abnormal in development known as dysplastic pelvis also varies in degree of occurrence.
Ability to flex extremities, excessive hyper flexibility.
  Moro’s reflex is absent (Moro’s reflex is the ability to draw arms across chest as if embracing.
Excessive skin on the back of the neck.
CATEGORIES OF DOWN SYNDROME