“At our 20-week anatomy ultrasound, we had a scare. The ultrasound tech could not find our sweet baby’s stomach on the ultrasound. As she continued to look, I noticed she was also spending a lot of time looking at her brain. They had found a CPC (Choroid Plexus Cyst) on her brain. The doctor came in my room to explain that these are ‘pretty normal’ in most growing babies and it should resolve on its own. She then explained that, with these two findings, there was a very low risk that the baby could have a genetic disorder. She was not concerned about a genetic disorder because of my age. I was ‘too young.’
She recommended that I have an ultrasound follow up, and a blood test (just to ease our minds) and if the cyst had not resolved on its own, she would send us to a specialist. Once again, she stressed not to worry because she was confident that it was nothing. Being a mother, of course, I worried. I didn’t originally want to be tested because it would not have mattered either way. I went ahead and got the blood test because it would be no harm to the baby.
We got the Quad Screen results in the mail the next week. The letter read that I had tested negative for all that the blood test had tested for, which are Trisomy 21, Trisomy 18, and neural tube defects. The ultrasound was clear of any cysts and they found her stomach. We were so relieved! All of the stress and worry was gone, and we honestly never thought about it again.
Fast forward to July 23rd, I was 40 weeks and 3 days pregnant. We went in at 10 o’clock that night to be induced. Our little sweet pea was being stubborn and did not want to come on her own. We were not there for long at all and Adley decided that she was ready! I had such a short labor and a fast and furious delivery. I pushed three times and there she was.
July 24th at 8:20 a.m. our 6-pound 3-ounce beautiful Adley Grace came into the world. Austin and I both looked at each other with tears of joy and happiness in our eyes as our new baby was laid on my chest.
Shorty after they realized Adley was not breathing, she was quickly taken over to the warmer to be suctioned and bagged. Extra help was called into the room where they all stood around our little girl. The mood in the room changed as I heard many whispers coming from the nurses that were examining her. I remember not being able to see her because of all the medical team in the room.
As 30 to 40 minutes passed (which felt like hours) my baby girl was finally being wrapped up by the doctor to bring her over to me. Not only had our lives just changed so much, little did we know it was about to change so much more. The doctor knelt down beside my bed with our new baby and said, ‘Adley is going to be okay, but there are some things I want to point out to you. There are some features that lead me to believe she has Down syndrome.’
Those words hit me hard. My first thought was, ‘No she’s perfect. That’s not possible – she was already tested for that.’ I remember the only thing I could say was ‘okay’ as I took Adley from her.
It was all a big blur to me after that moment. I held her trying to hold back tears. Doctor after doctor came into our room to examine our new baby just to tell us over and over again that they did believe she had Down syndrome. Every time one would leave, I found myself in tears again. My heart was broken. Adley was not even in our room for two hours when her oxygen levels and body temperature started dropping. A nurse and doctor came in again to explain that they decided Adley needed to be taken to the NICU.
I was scared, tired, disappointed, and vulnerable. I would go to visit her in the NICU and try to see what they could see. She looked just like me. Yeah, her eyes were almond shaped, her head was small, but so were mine. Her little ears and nose were perfect. The big gap between her first and second toes were just like her dad’s. Each time I would go back to my room and cry. This was not how it was supposed to be. I was grieving the perfect baby that I had in my head for 10 months. I went through all of the grieving stages in a very short period of time. I felt alone. I knew no one with or nothing about Down syndrome besides an old outdated view of what I thought she would never get to do or be. I felt pity for not only myself, but her. I wanted to know ‘why us?’ I remember telling Austin that I did not believe it. The doctors were wrong. I wanted her to be tested for Down syndrome as soon as possible because I was not going to believe it without the positive results.
The night the doctor came into my room when Adley was only two days old, my pity party quickly ended. He told us Adley wasn’t doing well and would need to be flown out to a bigger hospital. Adley had developed PHTN (Pulmonary Hypertension). He gave us 10 minutes to decide between two different hospitals that were both hours from our home. Not knowing much about either, I prayed I would pick the best one for her. I knew right then that my daughter needed me. She needed me to be strong for her. She needed me to be her mother. Adley needed me to love her just as she was, with or without a diagnosis.
So that’s exactly what I did. I rode on the helicopter with my daughter to the nearest Children’s Hospital while not taking my eyes off of her for a second. That’s the moment I actually became her mother. I saw her, and not her diagnosis.
We never left her side the 45 long, hard days she spent in the NICU. By the time her test results came back that she did indeed have Trisomy 21, it did not even matter to us anymore. We loved her so much just as she was. We grew closer in our relationship and closer as a family during those long days Adley spent in the NICU. We came to realize all that mattered to begin with was her health and that we were blessed with a beautiful baby girl.
Adley is now 16 months old and all I know is God doesn’t make mistakes. I now know ‘why us!’ She is perfect in every single way. Adley is the daughter I’ve always dreamed of and more! She is my reason, my person, and my best friend. Every time my sweet baby smiles at me, it reminds me I was made to be Adley’s momma and her advocate for life. I’ve always wondered what my purpose was here on this earth and I’ve finally found it. Considering that I had a 1 in 830 chance of having a baby with Down Syndrome, I would say I am a pretty lucky person.
I have been truly blessed with the sweetest, most precious baby girl ever. She is SO smart and determined to do anything. Adley has so much love and happiness to give. Sh ise sassy and so much fun. She has saved me in many ways and I cannot wait to see where this journey takes us. I know that she will do BIG things in her lifetime and I cannot wait to watch.
If only I could turn back time to what I know now – there would not be any time wasted on her diagnosis. We would have enjoyed our new baby just the way she was. Looking back now to that negative Quad Screen test, I am truly thankful for it. Not that it would have changed the fact that we were still going to have a perfect baby girl, but we got to miss out on a lot of unnecessary stress. We never had the unnecessary worrying while I was pregnant. No unnecessary stress of what our future was going to hold. No doctors trying to talk to us about the unimaginable. Just love at first sight!
We now know what pure happiness is. My heart is so full!”
This story was submitted to Love What Matters by Adley’s mom, Whitley Blue, of Northeast Arkansas. You can follow Adley’s journey on Instagram. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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