Friday, October 23, 2009

How we found out that Wysdom has DS.

31 For 21 Challenge: Day 23

I am pretty tired since Blyss and I are sick, so I am reposting the story of how we found out that Wysdom had down syndrome and the journey we went through.

Here it is:

I had a two year old girl named Blyss when I found out that I was pregnant. It was quite the shock, the pregnancy I mean. My husband and I wanted more children but we were not ready yet. We had only been married for 2 years and months earlier we just moved into our new home. I was in such shock when I found out that I was pregnant that I did the pregnancy test several times. After purchasing the third test…we realized we were going to have another baby!!! Fast forward to a year and a bit later and we now have Wysdom, an eight month old miracle baby with unparalleled strength. This post is the story of how Wysdom came to be.

Weeks prior to finding out that I was pregnant, I actually thought that I had something wrong with me. I was experiencing lots of cramps and pain in my side. At the time I worked at a nutrition store in town and some of the staff, including myself would try to self diagnose. Did I have IBS? Did I have food poisoning? I was sent for an early ultrasound to even see if I had a tubal pregnancy. Nope…it was not’t IBS (irritable bowel syndrome), I was pregnant!!
When the doctor asked if I wanted to do the screening I agreed and was sent for my ultrasound and blood work at a nearby clinic. It’s funny how you can look back and see the instant your life changes. During the ultrasound, the technician acted funny. I couldn't’t quite put my finger on it, but she seemed tense or distracted. She asked several questions about my daughter Blyss and how she was doing. I just knew that something was not right. At this particular clinic, they give you the results to carry over across the hallway to hand into the receptionist before you complete your blood work. With this little yellow paper in hand I walked over to the receptionist, but before I gave her the sheet I memorized the nuchal fold number on the page. To be honest I don’t know why, but I just did.

Later that evening I popped on the Internet when I couldn't sleep and looked up anything I could find on nuchal fold thickness. I just knew that something was wrong and I cried myself to sleep after looking at many different pictures of what could be. In the morning and next day I tried to shake off this vibe that I had. I went out shopping with my sister and mom, but did not feel that good and was quite distracted. Earlier that morning I had told my husband about my suspicions that something was wrong and he called the lab to see if he could get any information. Of course not!! After shopping that day I came home and one of my first words were “did anyone call?” The answer to that questions shattered our lives.

We were told that the nuchal fold was thick (which I already knew). We were also told that there was a marker on the heart and a mass on the brain. My midwife gently explained to me about a counseling appointment at a hospital about an hour away that I could attend in the next day or two. Of course we wanted go and get more information. After meeting with the counselor we decided to go with CVS testing to see what was wrong with our baby. I would not do amniocentesis because it was too early and anyway the thought of the needle freaked me out. To me the cvs testing sounded safer and the doctor who would perform it seemed quite confident in our meeting. She was very nice and very straight forward and open. She later would say things like “I am not sure what you should do, maybe pray” She never pushed anything on us. We also met a lovely social worker. In about a week’s time we got the results. Prior to the cvs results we were told that our blood work suggested the highest risk for Trisomy 18 with a one in 6 chances of the baby having it. We met with our counselor and she gave us the results- The baby doesn’t have Trisomy 18, or Turner’s syndrome we were told, but rather Down Syndrome. We really did not know what to do as we never thought we would be in this situation. Yes I was in my mid thirties, but we weren’t prepared for this. Really who is? Just hearing those words put us in shock!

Since we found out so early in our pregnancy around the 12th week or so, it left us with way too many weeks to talk about what we would do. We talked, cried, slept, argued and went through hell those weeks. We seemed never to be on the same page. Our main issue was fear and money. We thought about how could we financially handle this pregnancy? Also we were afraid of how it would all turn out. Would the baby walk? Could he or she talk? All of these were questions that we had to find out about.

Over the next several weeks we went through an immense amount of stress. Friends and family all had different ideas of what to do. Yes they would say that the ultimate choice was mine and that whatever we decided they would stick by us. Some thought having this baby would ruin our lives. When the stress became too much to bear, we decided to book an appointment for termination the following week. When I thought about it though, I would get a sick feeling in the pit of my stomach. I researched how and where the termination would be done and in a week’s time it would be over we thought. However on the Friday afternoon about a week away from the appointment, my sister noticed that I was ill at ease and told me “Don’t do this if this is not what you want to do” At that moment I called the counselor and requested more guidance. She let us know that we still had choices to do whatever we wanted. In the meantime we met with a family with a little girl with Down Syndrome, I talked to a mother of a teen with Down Syndrome and I read voraciously. The mother of the teenager said this “if you want to parent this child, you will and can”. This and the families we met stuck a cord with me. One afternoon when the counselor called I asked (without my husband knowing) what the sex of the baby was? I just needed to know. It’s a boy she said! Finding out the sex of the baby was the last thing that tipped the scale and our final decision was to keep our baby. It made the baby real in our minds.

The pregnancy was hard, with stress and medical issues popping up here and there. Too much fluid, small baby, stunted growth were things that we heard. The most shocking news was that Wysdom had a heart defect called AVSD and that this would need surgery. Wysdom was delivered 3 weeks early due to faulty placenta that didn’t allow him to grow. He was born via emergency c section on November 27th 2008 at the weight of 4 pounds and change. It was love at first sight as he screamed and fought his way into this world. All the medical staff said he was feisty!! I should have known from the delivery that he was a fighter and that he was meant to be here, but that’s a whole other story that I will save for the next post…..


Tara said...

Great story! I hope you don't mind my asking, but what would you council someone else in your same situation? Since termination was never a question with us I find I'm at a loss at times to council others.
Thanks! Hope you feel better soon!

Tausha said...

Wonderful story, thanks for sharing. So many emotions we go through in all of this. You are a strong person and a great Mom. I am so glad you have Wysdom as your son.

Unknown said...

Thanks for sharing. Looking forward to reading more of Wysdom's story.

Beverly said...

thanks for sharing Sasha!

SunflowerStories said...

Wow, to know so early! I often wonder how I would of reacted if I knew prenatally. I'm sure the doubt and fears are overwhelming no matter when you know, but the society pressure has to be such a burden. It sounds like you had great doctors that didn't pressure you.

mauimom said...

It brought tears to my eyes. I always get emotional when I read other's stories, it just hits me close to the heart. We all felt the impact of our child's diagnosis and now the joy that our child has brought us, we all share that common thread.