Thursday, August 14, 2008

Our newest granddaughter...

On July 15, 2008 we welcomed Danya Elizabeth to our family. She is my son, Nathan's first child. Danya lives in Northern California. She weighed 6 lbs. 8 ozs., and was 19-1/2" long. She was born at 4:11 pm by C-section. She's doing well and is a very good baby!

My sister, Karen was able to meet her and hold her before I was! :-) Danya made a trip to Southern California about a week ago! The best thing about it was I got LOTS of pictures since Karen likes to take pictures even more than I do! :-)

Unfortunately, this week a blood test was positive for Down syndrome. A nurse at the hospital noticed a crease in Danya's hand that is sometimes a "sign" of DS. There are so many obstacles to face in life as it is, that this is just one more stumbling block for her. I know how heavy my heart has been since we received this news and I can't even imagine what her parents must feel.

What is Down syndrome? Down syndrome is a chromosomal disorder that includes a combination of birth defects. Affected individuals have some degree of mental retardation, characteristic facial features and, often, heart defects and other health problems. The severity of these problems varies greatly among affected individuals.

How common is Down syndrome? Down syndrome is one of the most common genetic birth defects, affecting about 1 in 800 babies.

What causes Down syndrome? Down syndrome is caused by extra genetic material from chromosome 21. Chromosomes are the structures in cells that contain the genes. Each person normally has 23 pairs of chromosomes, or 46 in all. An individual inherits one chromosome per pair from the mother's egg and one from the father's sperm. When an egg and sperm cell join together, they normally form a fertilized egg with 46 chromosomes. Sometimes something goes wrong before fertilization. A developing egg or sperm cell may divide incorrectly, sometimes resulting in an egg or sperm cell with an extra chromosome number 21. When this cell joins with a normal egg or sperm cell, the resulting embryo has 47 chromosomes instead of 46. Down syndrome also is called trisomy 21 because affected individuals have three number 21 chromosomes, instead of two. This type of error in cell division causes about 95 percent of the cases of Down syndrome.

The symptoms of Down syndrome can vary widely from child to child. While some kids with DS need a lot of medical attention, others lead very healthy and independent lives. Down syndrome affects kids' cognitive abilities in different ways, but most have mild to moderate mental retardation. Kids with DS can and do learn, and are capable of developing skills throughout their lives. They simply reach goals at a different pace - which is why it's important not to compare a child with DS with typically developing siblings or even other children with the condition. Kids with DS have a wide range of abilities, and there's no way to tell at birth what they will be capable of as they grow up.

Myth: People with Down syndrome are severely retarded.
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Children with Down syndrome are definitely educable and educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social and recreational activities of the community. They are integrated into the regular education system, and take part in sports, camping, music, art programs and all the other activities of their communities. In addition, they are socializing with people with and without disabilities, and as adults are obtaining employment and living in group homes and other independent housing arrangements.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Women with Down syndrome can and do have children, but there is a 50 percent chance that their child will have Down syndrome. Men with Down syndrome are believed to be sterile, with only one documented instance of a male with Down syndrome who has fathered a child.

Danya's mom, Christine has said it best "Down Syndrome is just a label and doesn't reflect who she is or who she will become".

With lots of love and support from her mom, dad and all of her family, Danya is sure to thrive! It doesn't matter...she's still a beautiful baby if I say so myself!

2 comments:

Linda and Andy Clarkson said...

Congratulations on your new Granddaughter! We were sorry to hear of her medical challenges - but we agree that your daughter-in-law said it best ... just a label. We have several downs syndrome people in our family - all of them are way past 40 years old now and all have been able to have successful lives. It is not a sentence - just a challenge. Take care and our love to you all, Linda and Andy

Rick Stone said...

My Baptist Preacher daddy always told me that the Lord does not lay more on us than we can handle. There will be a challenge ahead but things seem to work out. God be with you and your family.