Thursday, October 29, 2009

One Year Ago Today…Our Prenatal Down Syndrome Diagnosis

*This is the story of Miss Banana's diagnosis. I figured that after a year, it was time to write it. It is more for my benefit than anyone else's. It is very long. Some of it may not seem nice or happy--that's because at the time, it wasn't. Oh how I wish my then-self could see Miss Banana and I now! If I had known the pure joy that Miss Banana would bring into my life, perhaps this story would be different. But I didn't know and the story is what it is.

I took T-Man to preschool. Fearless and I came home; I started folding laundry while Fearless watched SuperWhy! I was about halfway through Mt. Laundry, when the phone rang. It was Joanne, the other midwife. Carol, my midwife, was out of town.

Joanne started talking. "We received the results of your quad screen. And your risk of having a child with Down syndrome is abnormally high. We would like you to come in immediately to have an ultrasound to make sure your dates are right." Or at least I think that is what she said. Things got a little fuzzy after "risk-Down syndrome-high". I sat down on the laundry, toppling a few piles. (Funny the things you remember...) I tried to grasp what she said. I was having a hard time believing that I was really having this conversation--I vaguely remember her saying something about false positives and how if my dates were off or if I was having twins the test results would be skewed. Whatever the case, she wanted me to have an ultrasound right away.

As soon as she hung up--I burst into tears. I called Dr. C, who thankfully was not in class. I was sobbing and incoherent at this point--but somehow managed to communicate that something was wrong and he needed to come home NOW.

I hung up the phone and dialed my sister--I couldn't be alone while I waited for Dr. C to get home. She could tell something was wrong before I even got past hello. I told her the news along with the twins/wrong dates scenarios. T-Man had been saying for a few weeks that I was having twins--I had laughed about it and said that I had no desire to have twins. As we were talking, my sister said, "Well, maybe twins wouldn't be so bad." I agreed.

Throughout my pregnancy, I knew something was different. Because T-Man had been talking about twins so much, I thought maybe he was right--in my earlier office visits, I had even asked Carol to check again to make sure there wasn't a second heartbeat. When she hadn't found one, I thought that maybe I was having a girl and that's why it was different. I tried to push the differentness out of my mind, but at the edge of my thoughts, there was a general unsettled feeling that I couldn't shake.

As I waited for Dr. Corn to come home, I remembered an instance that happened during my pregnancy with Fearless. I was at devotional for church. The choir was singing and there was a woman who was deaf signing the song along with the choir. As I watched her, I was struck by the beauty of her language. Unexpectedly, I had the impression that I would have a child with special needs of some sort. I brushed away the thought and when Fearless was born without any difficulties, I dismissed it completely. But now, I remembered.

Fearless had long since quit watching SuperWhy! and was trying to figure out what was wrong with his mommy. He tried to help me feel better--he brought out his favorite stuffed animal and gave it to me. When my tears still didn't stop, he brought another and another and another until he had exhausted the entire stuffed animal collection. He gave up on the stuffed animals and just sat on my lap clinging to me as I cried.

Dr. C came home. He hugged me and then I headed out the door. As I was driving, a Primary song I had learned as a child started running through my mind. I don't think I had sung it since I was maybe 10, but somehow, I remembered the words:
My life is a gift
My life has a plan
My life has a purpose
In Heaven it began
My choice was to come to this lovely home on earth
And seek for God's light to direct me from birth

I will follow God's plan for me
Holding fast to His word and His love
I will work and I will pray
I will always walk in His way
And I will be happy on earth
And in my home above

I thought about the words--did I really believe them? Was having a child with special needs really God's plan for me? How can I handle that?? Can I really be happy with a child with Down syndrome?

At the doctor's office, the ultrasound tech was fabulous. She could tell I was in shock and panicked. She talked gently, she moved slowly--I felt a little like a scared cat expertly being coaxed down from a tree. She asked me if I wanted to know my baby's gender--which I did. A girl. After two boys, I was having a girl. The news was welcome, but unimportant. She continued the ultrasound--no hard markers for Down syndrome, but some soft markers--shorter femur, shorter nasal bone, that made it impossible to rule it out. She listed my options: 1.) Do nothing--wait for the baby to be born to find out more; 2.) Have the amnio done to know and be able to prepare emotionally/mentally; 3.) Have the amnio done to know and terminate the pregnancy.

I immediately ruled out Option #3. If God's plan for us was to have a child with special needs, Dr. C and I would figure it out. I told the tech I had no desire to terminate, no matter what the results were. Thankfully, that was the only time I was ever asked if I wanted to abort my baby. I asked what my odds of having a child with Down syndrome were--1:180. It doesn't sound like much, but compared to the 1:960 odds I had before the quad screen, 1:180 seemed incredibly high. I asked about amnios--my tech said in her 17 years of being a tech, she had never had someone miscarry with her during an amnio, but, in general the chance of miscarrying during an amnio is 1:200. I weighed the odds...and decided to have the amnio done. I HAD to know. I couldn't spend the rest of my pregnancy wondering--I needed to know one way or the other. We scheduled the amnio for one week later. I was terrified. I left the office, clinging to the few ultrasound pictures she had sent me home with. Another pregnant lady in the elevator saw the pictures and asked if I had found out my baby's gender. I told her a girl. And then I started crying again.

I went home. I told Dr. C it was a girl. I cried more. We all went to pick T-Man from preschool. Dr. C went in; I couldn't be around anyone or say anything without bursting into tears.

A week went by. I remember taking the boys to Boo at the Zoo, I remember taking them trick-or-treating, I remember raking the endless leaves in our big backyard. I cried constantly. The questions circled in my mind, like music stuck on continuous play. Was my impression during my pregnancy with Fearless correct? Did or didn't she have Down syndrome? Would she always live with us? How would T-Man and Fearless handle having a sister with special needs? Would she suffer? Would we become "that" family--you know, the one with the r*tarded kid? Would she know us? Would she love us? Would I love her?

The day of the amnio arrived. In the morning, Dr. Corn had his oral comprehensive examinations for his doctorate. In the afternoon, we went to the doctor for the amnio. I was terrified. The doctor and his student came in. The tech from the week before once again, expertly calmed me down. The doctor did the test. I couldn't watch. The tech did another ultrasound, thankfully, the amnio had gone perfectly and we didn't miscarry.

The waiting began again--the results could take up to two weeks to come back. More leaf raking. More crying. More questions. Lots of Oreos. Lots of eating out. No answers. One night Dr. C and I were talking about it. We came to the conclusion that she either had Down syndrome or she didn't and there was nothing left to do but wait.

Thirteen long days later, the phone rang again. I felt like I was in a movie--you know, the wide camera angle in the sky, the phone rings, and the camera zooms into the house super fast. I knew it was THE call. I was cleaning out the coat closet. It was one of many projects I had created for myself to take my mind off the waiting. I had just finished pinning all the matching gloves together and I was about to rearrange the snow boots. On the phone this time was Carol.

She was too chatty. She asked what I was doing; when I told her I was arranging boots, her polite courtesy laugh was too forced. I knew the results before she said the words. "We have the results of your amnio back. Your baby tested positive for Down syndrome." I thanked her for telling me and tried to get off the phone. She stopped me. Something about going to a geneticist to learn more. She wanted to go with Dr. C and I to the appointment so we would all know what was going on. I was grateful to her for that. I finally got off the phone and started crying again.

I called Dr. C. Positive. Come home, NOW.

I called my sister. Positive. Just talk to me until Dr. C gets home.

Fearless got out all the stuffed animals again.

For the next few weeks, I cried constantly. My heart ached for the baby I thought I was going to have. Dr. C and I would put the boys to bed and then he would hold me while I sobbed. I love that man.

One of my friends, who didn't even know about our testing, even had a dream about me crying a lot. I guess I was sending out pretty strong signal. Another friend told me about some online message boards for parents of kids with Down syndrome. I tried to look at them, but I could only read a few posts before I would break down. I didn't want to need to be part of those groups. Another friend asked me if I was angry with God. Her question struck me--was I angry with Him? No. More confused, lost, spinning, drowning in my new paradigm.

At the beginning of January, we went to the cardiologist. I had begun to pull myself together--only crying 2-3 times a week instead of 2-3 times a day. I was hopeful going into the visit--about 50% of kids with Down syndrome also have heart defects--maybe we would be on the "no heart defect" side. No luck. Our baby had complete A/V septal defect--essentially two holes in her heart that would require open heart surgery within the first few months of her life. It was another blow. I held myself together until we got back in the van. Then I cried again.

Only this time, I didn't care about the Down syndrome, I just wanted my daughter to live. She could live with Down syndrome, but not without a heart. As odd as it sounds, the news of her heart defect was actually good for me. It snapped me out of pity-party land and made me remember what really matters. My daughter's life is important, her IQ is not.

I began to reach out. I joined those message boards that I had avoided before. I read books about Down syndrome. I researched hearts and heart surgery. Dr. C and I even went to a New Parent meeting held by our local Down syndrome family support group. It helped. I began to see how people and families touched by Down syndrome were more alike than different. I began to trust God that everything would work out as it should.

By the end of my pregnancy, I was done grieving for a child that didn't even exist. I had gotten used to the idea that although Miss Banana's diagnosis was not in our plans, she IS the daughter we are supposed to have.

When Miss Banana was born, I wanted to see her right away. She was having trouble breathing, so they put an oxygen mask over her as they placed her in my arms. I examined my baby. She was beautiful! Long hair, cute chubby cheeks, little tiny nose, ten fingers, ten toes. What had a I been so afraid of? There was nothing scary about my new little baby. She needed me just like all babies need their mommas. As I cradled her precious new body in my arms, despite her medical difficulties, I felt at peace with her extra chromosome. I knew that I just needed to let go and have faith and that God would take care of us. We could handle all of the things our journey together would bring. We would be okay. We would have joy.

And it all began one year ago today.


Michelle said...

Thanks for sharing your story Carrie! You are amazing! Miss Banana is such a sweet and beautiful little girl!

E. Lee said...

After reading your post, I really have no words. Thank you for giving us an honest window into your grief and anguish. You know how blessed you are to have Ms. Banana and to have gone through this entire experience, it's "written all over your blog" so to speak, and you are a stronger, wiser woman than you were a year ago. That's important because sometimes all we can ask for it mental, emotional,and spiritual growth. There will be challenges, but we will be better for them. You're there, my dear.

Anonymous said...

That was beautiful, Carrie. It's funny how we never spent much time together, but I feel such a connection with you.

Lyssa said...

Carrie, I love you. I have to quit reading your blog at my office. My office manager walked in and I had tears running down my face. Your experience felt so very familiar. I read here and I don't often comment, but I was thinking the other day the I was so very proud of you kiddo. You think and say what I hope I'd think and say. I wish we were geographically closer just so I could hug you.

The Mussertons said...

Beautiful post Carrie! You had me in tears too. I know your honesty and openness will help so many others. Your kids are lucky to have such a great momma!

Anonymous said...

Teary eyed, this was a beautiful thing to read this morning. Thank you for sharing it. -Lora

stephanie said...

Hi, I just wanted to come over and thank you for your comment.
What a beautiful post, sounds like our stories began around the same time. Miss B is precious!
I'm very glad I came by and got to read how your story began.

Jenny said...

Beautifully written <3

P said...

Amazing journey! I love the song, our minds are so incredible. Music has helped me so much in life.

We also have seen perspective with the medical challenges and are grateful ours with our two yr old with DS have been few. Prenatally, I also had some soft markers and the heart issues (none thankfully) gave me perspective.

I luckily had the revelation with a healthy high def ultrasound except calcification at his heart , that diagnosis did not say anything about his prognosis of a loving wonderful life. Thank heaven for that thought minutes after the news of soft markers and techs/docs (not our OB) telling us to terminate.

Thanks tons and sharing that it's okay to sort it out. Getting assistance and connecting is hard but necessary, we need to reach these families even while awaiting results. What quick source can help do you think?

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