Before I go into all this genetics 101 stuff that can be so confusing.....I would first like to quickly share a few facts about Down syndrome.
The following is from a book called "We'll paint the Octopus Red" written by Stephanie Stuve-Bodeen.
(( In the typical population babies are born with 23 pairs of chromosomes so a total of 46. One set is from the Mother's egg and one set from the Father's sperm. Babies born with Down syndrome have one extra chromosome number 21 in some or all of their cells. Chromosomes are tiny thread shaped things inside your body. They contain the directions that tell your body how to grow. These directions tell your body what color your eyes and hair will be, how big your nose will be, whether you will be a good singer, and many other things. When a baby is born with an extra chromosome number 21 it mixes up his body's directions a little. This is why babies with Down syndrome may look a little different from typical babies and may need to try harder to learn new things.)) To learn more please visit http://www.ndss.org/en/About-Down-Syndrome/Down-Syndrome-Fact-Sheet/
Back to the genetics counselor's office visit.....Ms. K was very kind and compassionate as she educated us about our baby's genetic condition. She even told us that our baby would do everything other children could do just at her own pace. Then she handed us the Amniocentesis lab results, this paperwork showed pictures of our baby's chromosomes all lined up in sequence neatly. I saw the numbers and was totally confused our baby had 46 chromosomes the typical amount?? Ms. K further explained that our baby did in fact have 23 pairs technically but if we looked closer there was a little tail end of a extra 21st chromosome attached to our baby's 15 chromosome, Therefore she had part of an extra 21 chromosome this is known as Translocation Down syndrome. ( please note: its still the same as typical Down syndrome.)
What did this mean?? Was our baby going to have "less" Down syndrome?? My husband and I were thinking to ourselves, we had no clue so Ms. K had to explain that it was the same as old fashion Ds the only difference was how the the extra chromosome got there. Ms. K told us that the Translocation could have happened by chance or that in some rare cases it meant that one of parents was a balanced carrier of a chromosome abnormality. Talk about crushed not only did our baby have Ds but now it was the fault of one of us. My husband and I signed the papers to have the test to confirm or rule out the possible balanced carrier issue. Now it was time to talk about our "options" we were told we could do one of three things abortion, put baby up for adoption or just proceed with the pregnancy. I then asked Ms. K "How did they do the Abortion?" she told us the procedure would be in a hospital setting that they would inject the baby's heart with something to stop it from beating so she would not feel any pain. Then the Dr. would deliver the baby and that I would not be able to see her. I asked if there was any way we could have our baby's remains and give her a proper burial. Ms. K said she would get approval for that and get back to us on that. She then told us that there was always Adoption that there was a waiting list of people waiting to adopt a baby with Ds here in the states.
After listening to all that information my husband Ricky with red teary eyes looked at me and said "No! No! Yes. We were going to have this baby no matter what!" I just sat there silent but in my head I was screaming "Hey wait! What about me? I can't do this! I don't want this!" but I kept that to myself. On our way out of office I spoke to Ms. K while my husband was in the restroom. I asked her "Who do I need to call if I didn't want to continue my pregnancy??" she said "You can call me, I will handle the details" she then handed me a card looked me in the eye and said "If that's what you want to do it would be best that we set it up as soon as possible because it would only be harder for you." The car ride home was silent.
That evening my husband and I didn't really speak, I called my mother so I could tell her the bad news. After hours of crying my eyes out in my mother's arms, I confessed to her that I couldn't bare the thought of seeing my baby suffer and that I wanted to have the abortion. She tearfully told me she would support whatever I decided but I could see and hear in her voice she was in pain too.
Later that night I couldn't get to sleep the pain was so deep it was hard to breathe. I loved my baby girl with all my heart but all I could see in my mind was outdated stereotypes of how horrible her life would be because she was developmentally disabled. I wanted to send her back to God where she would NEVER suffer any pain or ridicule and be protected forever. In my mother's heart I was willing to suffer the immense grief of loosing my baby so that she would not suffer here on earth. In the middle of the night I finally decided I needed to be honest with my husband and I woke him up to talk. In tears I told him I couldn't do it, I couldn't stand the pain of seeing my child disabled and suffering in this cruel world and I wanted to have the abortion. He then held me close and said that he didn't think he could agree to do that, he said that she (our unborn baby) would forever haunt him in his dreams and ask him "Daddy why wasn't I good enough?
I went into the guest bedroom to cry in my mother arms some more, we cried and talked for about 2 hours. I told her that Ricky couldn't agree to the abortion so I was second guessing myself. She was trying to support me but I could tell she was hoping I would agree with my husband. As we talked I started to realize I was not strong enough to move forward with the abortion without my husbands approval his resistance made me realize what exactly I was planning to do, which was to kill our baby girl not protect her. This realization hit me hard I was not capable of doing such a thing but my brain wanted me to and my heart would not let me. As we spoke my mother encouraged me to see the situation in different way she told me there will be pain in both decisions but only one decision had any sort of joy. Life.
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