One question that parents with kids with Down syndrome often get asked is: Did you know before they were born that they had Down syndrome?
For us, the short answer is: We knew it was possible, but we didn't know for sure because we declined the amnio.
For a longer explanation, I will repost here the first blog entry I made when I started my previous blog "Megan's Place in the Sun" back in 2008:
Thursday, November 6, 2008
First Blog
Today, November 6th, Gwyneth turns eight months old! I can’t believe how fast the months have gone since her surgery.
Today is also the 1 year anniversary of an ultrasound I had where two things happened: (1) we found out our baby was a girl and (2) the phrase Down syndrome was first mentioned to us. Four days earlier, at 21 weeks pregnant, we had the traditional mid-pregnancy scan that I had looked forward to as one of the highlights of my pregnancy. We wanted to know the sex of our baby but the little being was sitting cross-legged and hid the answer from us! That was Friday morning. Over the weekend we decided we would just wait until the birth to know the gender, and we got kind of excited at the idea of a surprise. On Monday, my doctor’s office called with a different kind of surprise. The nurse said that some things on the scan were concerning, particularly the lungs and kidneys, and I would require a follow-up ultrasound with a perinatalogist. One would be coming from Denver to our local hospital the next day so she made me an appointment. This was the beginning of my denial stage (which lasted until 2 days after my baby was born) in which I believed that the doctors were being overly cautious and my baby was going to be perfectly fine. I think it was simply a defense mechanism as an expectant mom to have blind faith that the baby I was carrying was healthy.
Nevertheless on Tuesday, November 6, 2007, we nervously went to the hospital to see our baby on a scan again with very different emotions than the scan four days earlier. The ultrasound technician couldn’t tell us much except for the sex of the baby, so we decided to find out after all. When she said “it’s a girl” I started to cry; the emotional build-up to that one little piece of information had been incredible. Eventually the perinatalogist came in to explain to us that he saw some potential problems: there was fluid around one of Baby’s lungs that was not draining out, the kidneys might be a little dilated, and the humerus bones were measuring a little shorter than average. He asked if we had done the blood screening tests earlier in the pregnancy to search for birth defects or chromosomal abnormalities; we had not. He said the issues he was seeing on the scan were considered soft markers for Down syndrome but could not diagnose it definitively. He recommended that we do an amniocentesis right then since I was already almost 22 weeks pregnant. I don’t remember if he actually mentioned the words “abortion” or “terminate” but I know that it was implied. He explained that with ultrasound guidance the amnio needle would be inserted in my belly as far from the baby as possible to withdraw some of the amniotic fluid. I asked about the risks of miscarriage which are 1 in 200. We asked if doing the amnio would allow doctors to know anything that could help with improving the health of our baby; he said no.
He left us alone then to decide what we wanted to do. It was an extremely surreal experience. The idea of Down syndrome did not sink in yet, but I was not afraid of it because I had heard enough about DS in the past to form the opinion that people with DS could lead happy and fulfilling lives. I knew I could not give up the little girl that was growing inside me and I started to feel very protective of her. I wanted to protect her against the risk of miscarriage from the amniocentesis. I knew that if I went along with it and lost her then, Down syndrome or no Down syndrome, I wouldn’t have been able to forgive myself for making a decision that put her in harm’s way. So we declined the amnio, telling the perinatalogist that the information wouldn’t change our minds about continuing the pregnancy and we started to talk with him about the future and the health of our baby. We continued to have ultrasound check-ups once a week to watch the problems, especially the fluid around Baby’s lung. At that time, there was never any problem seen with her heart or any other indications of Down syndrome such as the nuchal skin fold marker or shortened femurs.
Within a month, the fluid was gone and our baby seemed to be out of danger. On December 11, 2007 we had our last ultrasound of the pregnancy and confirmed that her lungs looked healthy. The perinatalogist said that there was still a chance that she had Down syndrome and we wouldn’t know until she was born. I doubted that she had DS and asked him what he thought the chances were. He said 10%; I thought “Okay, 90% chance she is normal” without realizing that 1 in 10 is a significant increase from the 1 in 1000 rate for an expectant mother my age. The concerns were pushed to the back of my mind as I entered the 3rd trimester, happy to believe that everything was okay.
Since Gwyneth’s birth I have learned that many people do not receive any indications of DS during pregnancy and are first confronted with the diagnosis when their baby is born. I feel lucky that I did have time to think about the possibility and sort through some of my feelings before her birth. Other parents do find out during pregnancy through amniocentesis (or other invasive tests) and receive a prenatal diagnosis. I was shocked to also learn that of people with an official prenatal diagnosis of Down syndrome, around 90% choose to terminate. I believe women should have the right to choose this option, but it saddens me that this number is so high. I can only think that people must not be aware of how wonderfully children with DS can enrich the lives of their family and others. This has inspired me to become an advocate for Down syndrome and help to educate people on the reality of the condition in today’s world.
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