Monday, March 22, 2010

Antalya's Prenatal Diagnosis

It was 3 1/2 years ago, and I was expecting my first child. I wanted to be excited, but to be honest it was a completely miserable pregnancy. And I couldn't get over the nagging feeling that something just wasn't right. I voiced my worry on a few occasions, but everyone continually insisted that everything was just fine.

Finally at around 30 weeks my midwife agreed to an extra ultrasound "just to make sure" they hadn't missed something. For an unexplainable reason I was carrying about four times the normal amount of amniotic fluid. I looked like I had to be carrying twins. It was at this ultrasound that the technician finally saw what had been missed in the previous two ultrasounds, and the cause for all the excess fluid. A "double bubble" (medically known as duodenal atresia), meaning my daughter's stomach and intestines weren't connected. And then for what felt like at least an hour, we sat and watched as the technician looked at our baby's heart, and then looked at it again, and then looked some more. All the while assuring us everything was just fine. I tried to believe her, but when she flipped the machine to the 3D mode and printed us some photo like images of our "beautiful baby" for free I knew everything was not ok.

What happened next, and the misinformation we received still boggles me. We sat down with our midwife as she explained the "double bubble" all the while ensuring us that it was not a big deal, that she would be born normally and eventually need surgery to repair the birth defect. She then said it appeared our baby only had 3 chambers in her heart. And both of those defects led her to believe our baby might have Down syndrome. She thought it might be good to go see a specialists, but left it up to us to decide. And with that we were told to come back in two weeks for another check-up.

That was a Friday morning. Stunned from the news, but still unsure what it all meant, Jason and I decided that until we could get some solid answers, worrying wasn't going to do us any good. So we agreed to tell no one what the midwife told us, until we knew for sure what was going on. So with that, I returned to work for the remainder of the day. That night I had an appointment for a massage. I remember laying on the massage table and suddenly being overcome with emotion. As the masseuse was trying to relieve all the tension in my body I suddenly began sobbing uncontrollably and telling her there was something wrong with my baby. The rest of that night and that weekend is a bit of a blur. The only thing I do remember is lying when my mom called to see how the ultrasound went. As I tried my best to hold back the tears, I told her everything looked great. Mom, I'm sorry I lied - but I knew it would only make it more difficult if you were worrying too.

Monday finally came. I found a new doctor and made an appointment for the next day.

Jason met me at the hospital for my 9:30 appointment Tuesday morning. When I look back over my life so far - this day stands out above the rest as the most emotionally trying day. I remember sitting next to Jason who was holding my hand in a cramped conference room, with an high risk OB, a genetic counselor, and a pediatric surgeon as they all explained the reality of our situation to Jason and I. Her heart looked fine, but the "double bubble" was a complete duodenal atresia meaning that our daughter would need surgery as soon as she was born. She would be transferred to the children's hospital shortly after birth. I would have to give birth in the room next door to the NICU so she could immediately be handled over to the NICU staff. She would most likely be in the NICU for 2-3 months recovering from surgery. And yes, she more than likely had Down syndrome.

And that was the good news.

The bad news was that due to amount of amniotic fluid I had, the doctor expected me to go into preterm labor within the week. At only 30 weeks, if she were to be born, her chances of recovering from surgery were not very good.

We were then given two options.

Option #1: Do nothing. Most likely give birth by the end of the week. Not a great option.
Option #2: Have an amniotic reduction TODAY (this is where they insert a needle with a catheter into the womb and remove the excess fluid). Although this would relieve some of the strain and hopefully prevent preterm labor, the procedure itself carried a huge risk of causing preterm labor. Not a great option either.

By now it was lunch time. The doctor told us to go walk around for a bit, get some lunch, and then let her know our decision. And then she added that we were not to leave the hospital until we decided.

What do you do in such a situation? I suddenly felt like a child who was scared of the dark, but had no where to run for comfort. So, Jason and I sat in the car, and he let me cry. And he held me and told me it was going to be alright. And then when all the tears were done we decided it was time to become parents and decide what was best for our child. We called the only two people we could think of that could give an education opinion about the situation.

We called my grandpa who is a retired doctor. And then we called Jason's sister who is a midwife. And then we went to the cafeteria for lunch.

I remember ordering chocolate cake. I couldn't taste it, I was only going through the motions of eating, all the while telling myself that the cake was so delicious.

Then with courage in our steps and a forced grin on our faces we marched back up to the high risk pregnancy area of the hospital with the decision that to do something was better than to do nothing.

They slathered my big, round belly with iodine to prevent infection, pulled out a monster needle, and with Jason holding my hand they took out 2 liters of fluid from my belly. I felt dizzy from the sudden weight loss and could barely stand. So I was taken to labor and delivery in a wheel chair. And then we waited. We were told that if after two hours of waiting there were no signs of labor we could go home.

I remember thinking how unprepared I was to become a mom and praying that I would not become a mom on that day. Praying that my daughter would not make her entry into the world until she was strong enough. The minutes ticked by so slowly. And eventually our prayers were answered and we were discharged and sent home.

In the course of a day my world had been turned upside down and for the next several weeks Jason and I worked on dealing with the whirlwind of emotions and doctor appointments. It was confirmed that our daughter did indeed have Down syndrome a week later, but by then we were already prepared to hear the news.

There were appointments every week for a fluid reduction (my body was continually creating more fluid, so every week they would remove 2 liters to get me back to near-normal levels), appointments with the genetic counsellor, the medical geneticist, and pediatric cardiologist to make sure there were no heart defects.

Jason and I faced the reality that there was a chance our first born may not live. To cope, I decided to pack away all the baby things and put them in storage until she was born. If she were to die, I knew I couldn't face coming home to all of the "things" that she would never know.

And if she were to live, we had to come to terms with the fact that we would be raising a child with special needs. I'm ashamed to admit that that scared me almost as much as the thought of her dying. I knew nothing about Down syndrome and could only imagine the worst.

But slowly the weeks went on, with never a sign of preterm labor, and my baby growing bigger and stronger. And I grew stronger too. I sent emails to the local early intervention program and the Down syndrome support group, I did research online, and I met a friend who had a 3 year old son with Down syndrome.

By the time I gave birth to Antalya at 38 1/2 weeks I felt prepared and ready to face whatever came. There was only one nagging fear left. One that I never mentioned to anyone - not even Jason - because I felt so awful saying it.

I was afraid I would think my daughter was not beautiful.

Such a petty thing to be worried about. I know. But it plagued me constantly.

Her birthday finally arrived. Antalya was born and quickly passed through the window into the NICU. After she was hooked up to an IV, Jason was allowed in to see his daughter for the first time. Several minutes later he was back at my side showing me pictures of our daughter on the digital camera screen. I remember exclaiming, "she is so beautiful!" And she was! I couldn't take my eyes off the small image of her face. It was her! My first born! And oh, how I loved her, and how my arms ached to hold her.

She might not have been what had been expecting, but we soon learned that she was just what we needed. She was perfect for our family!

Having Antalya has taught me that life doesn't always go exactly how we think it will, but that's alright, it's life. You take what it throws at you and you turn it into something good.

Antalya was transfered to the children's hospital the next day and had surgery to repair her duodenal atresia when she was two days old. She amazed all the doctors and nurses and was home on full feedings within a month of her birth.

This picture was taken just a few hours before her surgery

And here's my little pumpkin on Halloween - one week before she was released from the hospital.


Runningmama said...

Thank you for sharing your story...and Antalya is absolutely beautiful!

Tiff and Dan said...

Thanks for sharing! Antalya is beautiful and so glad she is here!

Tandy Family said...

Oh my goodness, I never knew the whole story. Even though it has been a few years now, it seems like yesterday. My heart went out to you then, because it was the unknown, now my heart is swelling with pride just to know you!!! You are so strong, and I think your story will touch many hearts Sunshine!!!

Jeana said...

So Kaelyn and I just read this post, and we cried. Okay I cried. Its amazing how there are little similarities in our story, in many of the stories I've read about Pre-diagnoses. I totally was right there with you about wondering if my daughter would be beautiful. I worried about that even before I was married, but especially more after we found out she had Ds. Its funny because when I came across your blog and saw Antalya, I thought she was the most beautiful little girl I had ever seen. Her beautiful eyes and rosey cheeks. I said to myself, "I hope my daughter looks like her". Thanks so much for sharing.

Sonja said...

I remember that time too. I have learned so much from you Sunny. I love and respect you immensely.
Thank you for sharing this beautiful, treasured memory with us.

Bunsy said...

You had me in tears. Beautifully written.

Michelle said...

I had no idea you went through so much for the last part of your pregnancy! And having to have the fluid removed every week! What a fighter Antalya is - and she is so very beautiful! Thanks for sharing your story.

Linnea said...

Okay ... you should have put a warning label on this post to pregnant mothers about to give birth that reading the following story will cause them to sob uncontrollably. (I would have read it anyway and it was worth every tissue!)

mum2brady said...

fabulous post - thanks for sharing and know that I think Antalya is one of the most beautiful children ever - and she is so amazing :) Love LOVE the pic in your header!!!

Bee Manghi said...

thank-you so much i just had a little girl born 3 weeks ago with down syndrome and it was a total surprise so i'm still getting used to the idea. right now i just want her to come home from the hospital.