This page has been set up in Memory of Caitlyn Adams.
Caitlyn was born January 23, 2009 and after two weeks of life she was diagnosed with trisomy 18. The doctors gave her two weeks to two months to live. She lived to be three years old. In that time she open heart surgery, an emergency tracheostomy, g/j tube done. She has touched so many lives and helped so many others in the trisomy 18 community.
Caitlyn passed away from complications from RSV February 6.
A4cwsn will be donating an iPad in April, June, August, October and December to a child who has Trisomy 18, all in the memory of Caitlyn Adams.
You can click on the link and fill in the form at the bottom of the page if you have a child with Trisomy 18, each of the months listed above, we will announce the name of the child to be gifted the iPad. We will have a ChipIn acct set up in your name for others to donate should they wish to. At the end of the month the iPad shall be gifted to the child / family chosen.
Edwards syndrome (also known as Trisomy 18 (T18) or Trisomy E) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. It is named after John H. Edwards, who first described the syndrome in 1960. It is the second most common autosomal trisomy, after Down syndrome, that carries to term.
Edwards syndrome is caused by the presence of three – as opposed to two – copies of chromosome 18 in a fetus’s or infant’s cells. Edwards’ syndrome occurs in around one in 6,000 live births and around 80 per cent of those affected are female. The majority of fetuses with the syndrome die before birth. The incidence increases as the mother’s age increases. The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.
What causes Trisomy 18?
At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. A trisomy occurs when a baby has three #18 chromosomes instead of the normal two. This is something that happens at conception. And although many parents worry about this, it is important to know that parents have done nothing before or during pregnancy to cause this disorder in their child.
Are there different types of Trisomy conditions?
The most common trisomy is Trisomy 21, also known as Down syndrome, where a baby has three of the twenty-first chromosome. Trisomy 18 is the second most common trisomy and occurs when a baby has three of the eighteenth chromosome. This results in 47 chromosomes instead of the normal 46 in the affected cells. It is this extra genetic material that causes the problems associated with Trisomy 18. The third most common is Trisomy 13, also known as Patau syndrome.
While there are different types of Trisomy 18, this does not mean one is better for a child than another. With each type, there is a range of possibilities. Some children are medically fragile while others thrive; some children walk while others are confined to wheelchairs. It is hard to say how the extra chromosome will impact an individual child from the genetic diagnosis alone.
Types of Trisomy 18:
Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby’s body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.
Partial Trisomy 18: Partial trisomies are very rare. They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a “partial” piece of extra material from chromosome 18.
Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body. Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.
What are the characteristics of Trisomy 18?
The genetic material from the extra eighteenth chromosome can cause a variety of problems with varying severity. Just as children with Down syndrome can range from mildly to severely affected, the same is true for children with Trisomy 18. This means that there is no hard and fast rule about what Trisomy 18 will mean for your child. However, statistics show that there is a high mortality rate for children with Trisomy 18 before or shortly after birth.
Typical characteristics of Trisomy 18 include:
VSD (Ventricular Septal Defect): a hole between the lower chambers
ASD (Atrial Septal Defect): a hole between the upper chambers
Coarctation of the aorta: a narrowing of the exit vessel from the heart
Part of the intestinal tract is outside the stomach (omphalocele)
The esophagus doesn’t connect to the stomach (esophageal artesia)
Excess amniotic fluid (polyhydramnios)
Pocket of fluid on the brain (choroid plexus cysts)
Rocker bottom feet
Small jaw (mycrognathia)
Small head (microcephaly)
Severe developmental delays
Umbilical or inguinal hernia