Sometimes, there are answers.

For a few weeks I’ve been struggling a lot with “what if?” What if I had gone to Philadelphia sooner? What if I had pushed my doctors in Florida harder? What if I had told them to put all of the tubes in Aria’s chest and head at birth? What if I had told the doctors to keep fighting?

And then my ultrasound and MRI images from the Children’s Hospital showed up on my doorstep.

As I scrolled through the images one thing became abundantly clear. Aria had no lungs. I mean, technically she did. But when Dr. K said, “She has a small sliver of healthy lung tissue.” It really was just a sliver. A tiny little line of lung tissue pancaked on the side of her chest, smothered by a massive tumor. Seeing it clear as day in those images was both jarring and oddly calming.

She didn’t have lungs. They said it to me a thousand times, but to see it with my own eyes…

You know, some things are just not in our hands, no matter how convinced we are that we’re the ones in control.

It is also not lost on me that Aria lived over an hour, surviving on an underdeveloped, sliver of lung tissue. Maybe we could come up with a bunch of scientific reasons as to why she was able to live for so long, maybe it was God breathing life into my little girl. Either way, it was a miracle.
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My darling daughter, you were not defective.

To my sweet Aria girl,

I know when people talk about your CCAM, they often say you had a birth defect. Your Dad and I say it too. Sometimes, it’s so much easier to say you had a severe birth defect than it is to explain the ins and outs of congenital cystic adenomatoid malformation, hydrops, and pulmonary hypoplasia. Most people have no idea what those words mean. In fact, spellcheck has underlined most of those words in red because it doesn’t recognize them.

But to be honest with you, I don’t like the word “birth defect.” I dislike the way it implies you were defective. If you look up the word “defect” in a dictionary, it is defined as a shortcoming, imperfection, or lack. If you look up that word in a thesaurus, you’ll see synonyms like flaw, imperfection, deficiency, and weakness.

But my darling, you were nothing short of perfection. None of those words define you, not even a little bit. You were fearfully and wonderfully made. Your spirit is beautiful, and your undying presence is captivating. You stole my heart before I felt the flutter of your first kick. You commanded my love without even speaking a single word. Your brief life has impacted so many people, and your legacy continues to grow. You were powerful, my angel, and you still are.

You did not lack a single thing. It was our world that lacked the ability to handle your uniqueness. You were created for far more than we could provide. You were not born with a defect, you were born with great purpose.

All my love,
Mom

How do you stop your baby from developing a congenital defect? You don’t. 

The day we learned that Aria had a congenital defect in her lung, I drank a soda and ate a big ol’ bag of Cheetos. This might seem insignificant to a lot of people but for me it was huge.

Like most mothers, I was obsessed with trying to do the very best for my baby during my pregnancy. I immediately switched to an all natural, aluminum free deodorant. I started using fluoride free toothpaste. I made sure I was using chemical free cleaning products. I refused to take the anti nausea meds because of the risk of birth defects. I didn’t take any medications except Tums and my prenatal vitamins. I avoided foods that contained MSG. I religiously heated all cold cuts before eating them. I was so scared of mercury that I cut out all seafood. I’m a little embarrassed to say I even avoided standing next to a microwave while it was in use. I think you get the point by now. If someone said it could pose any risk to my child, no matter how small, I wasn’t doing it. I thought by avoiding all the “bad” things I could override nature and prevent all birth defects, boost brain function, and avoid any negative outcomes. 

I was wrong. 

My daughter was diagnosed with Congential Cystic Adenomatoid Malformation at my 20 week ultrasound. I was totally gutted by the diagnosis. I thought I had done everything right. How could this possibly have happened? What did I do wrong? But this wasn’t my choice to make. She was going to develop this defect no matter what I did. Most congenital defects aren’t anyone’s fault, they are flukes. It just happens. 

This is even true in cases of Spina Bifida. There are multitudes of mothers who blame themselves because they believe folic acid deficiency caused the neural tube defect. Despite everything the media tells us, it isn’t. Folic acid deficiency only accounts for about 60% of the cases and the rest just happen. You could literally take 4x the reccomended dose of folic acid and still have a baby with spina bifida.

I know it’s important to eat well and live a healthy lifestyle, especially during pregnancy. Yes, you should absolutely listen to your doctor and make some lifestyle changes, along with cutting out alcohol, cigarettes, and certain medications. I don’t disagree with that, but I also wanted to share a bit of reality. Everyone tells you to take your little miracle prenatal vitamin filled with lots of folic acid and you’ll be just fine! But that is simply untrue. 

I’m not saying any of this to scare expectant mothers, but I think it’s an important message. I’m involved in a few support groups for mothers experiencing the diagnosis of a birth defect and I can’t tell you how many times I’ve seen women ask “what did I do?” It’s frustrating and saddens me that these mothers, who are already enduring so much, are bearing this guilt on their shoulders. 

It is not your fault. You are not a cautionary tale. You are a good mother.

After a lot of research and several doctors telling me I wasn’t to blame, I finally took off the burden of guilt and shame over Aria’s diagnosis. It was incredibly freeing. I still have scars and bruises from bearing that weight, but I’m healing. If you have stumbled upon this blog and are currently experiencing the diagnosis of congenital defect, this message is for you. Please put down that guilt. It’s not your burden to bear.  

 

Blame.

I’ve done so much research that I’m convinced I could hold my own in a room full of doctors. I know more about congenital defects than anything I studied in college. I’ve never put so much effort into learning about something in my entire life.

I have spent most of my time searching for the answer to the question”why?” I’ve combed through countless medical journals, and read dozens of articles from the American Congress of Obstetricians and Gynecologists. I have had numerous doctors explain to me that there was nothing we could have done to prevent Aria’s defect, and this was not our fault.

But it wasn’t enough.

As her mom, I felt responsible for her. I was supposed to be a safe place for Aria’s body to grow, thrive, and prepare for life outside of the womb. From the moment I learned she had developed a cystic mass on her lung at my 20 week ultrasound, I felt like I had failed her. I wondered if the meals I missed due to morning sickness were the culprit. I wondered if the days I forgot to take my prenatal vitamin had deprived her of valuable nutrients. I spent hours looking up side effects for every chemical in our home. From cosmetics to cleaning products, I researched it all.

And I still found no one to blame.

I can’t tell you how incredibly frustrating that is. Congenital Cystic Adenomatoid Malformation took my daughter’s life and I have no one to blame. There is nothing I wanted more than to have something to project anger and hatred onto. I so wanted to believe it when I said this wasn’t my fault, and to remove this extra weight from my shoulders. There were even times when I wondered if God was punishing us for something. I know science has proved several times that this wasn’t our doing, but when it comes to your child’s life, that isn’t enough.

Today, while reading through blog posts written by mothers of angel babies, I came across this passage from the book of John.

“His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” -John 9:2-3

Suddenly I felt an overwhelming sense of peace. The bible tells us not to lean on our own understanding and to trust the will of God, but that never clicked for me until now.

I will probably never know why Aria developed a CCAM in her right lung. I will likely never have a reason for why the mass grew so aggressively. I will never understand why our baby’s life had to be so short. But I will take comfort and peace in the things I do know. Aria’s life was beautiful from the start. She gave us the happiest and most exciting moments of our lives. She taught us the true meaning of unselfish and undying love. Even though she is in heaven, we are still the grateful parents of a beautiful daughter. 

And one thing is absolutely certain, from the moment I saw her face, there was no denying that God’s works were indeed displayed in her.