I have a friend who is expecting her second daughter in about four months. The other day I received a letter from her about a little girl. I opened the email, fully expecting to see ultrasound pictures, read wonderful news about how bay is growing, how big the baby is, and other happy things. news of her pregnancy. But I opened the email filled with pain. My friend’s daughter was recently diagnosed with a condition called Trisomy 18, or Edwards Syndrome.
I’ll be honest with you, I didn’t know much about this condition when my friend dropped me off. I had two second pregnancies, and I never thought of any potential sin either of my children, or of any of my children. This can’t happen to anyone I know, it can happen to anyone I know. Unfortunately I was wrong. I knew I needed to train myself if I wanted to be of any help to my friend during this difficult time.
Trisomy 18 is a chromosomal abnormality that occurs in 1 in 3,000 live births. At conception, 23 chromosomes from the father and 23 from the mother combine to generate a child with 46 chromosomes. A baby is diagnosed with Trisomy 18, meaning that the baby has three 18th chromosomes. Trisomy 18 is almost always fatal, with most babies dying before birth. My friend has a 40% chance of a baby being born alive, a 20% chance of her daughter living less than one week and a 5% chance of her daughter living one year. Heartbreaking!
Trisomy 18 is diagnosed with extensive prenatal testing. Most often, some underlying abnormalities are discovered during routine ultrasound. This is where my friend’s journey began: an ultrasound routine. It was discovered in this doctor’s sign that my friend’s daughter had Spina Bifida, which is common with Trisomy babies. Because of that they were asked to enter amniocentesis. The amnio came back positive for Trisomy 18. That was when a friend and her husband were convinced that their daughter was not only going to have multiple defects, but was also likely to be born an angel.
There are several characteristics that can cause babies to be born with Trisomy 18. Often heart defects, kidney abnormalities, Omphaloceles (portion of the intestinal tract located outside the stomach. ) esophageal problems, clenched hands . Most infants will also have severe developmental delays.
After the diagnosis and much discussion with medical professionals, parents are faced with the debate between terminating the pregnancy, or carrying the baby to term. It is truly established that no one should have to be a parent. It is also a very personal decision based on many factors. Do not be judged by any parent in this position. As my friend said, it was really the most difficult decision she and her husband ever had to make.
My friend continues to amaze me with his strength. She offered advice to all her friends and family members to support her and her husband; be honest, ask questions and don’t be afraid to cry. I’m sure that’s all. I also taught myself in this situation. Now I feel more prepared to be there, continuing on this journey. Trisomy 18 is a sure path for any family to experience this diagnosis. It will not be an easy road to start and it will not be the outcome parents hope for after birth. A parent should not say goodbye to their child, and be very sorry for this situation, if they want to.
My advice to people who approach any child carrying this condition is to simply listen. Search Learn as much as you can. Be supportive. According to my friend, these are the things that have been incredibly trying for her and her husband during this time.
