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The Salty Mama

Coping with the News That Your Newborn, Beautiful Baby Has a Disease with No Cure

By Brittany BatesPublished 6 years ago 5 min read
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The day my life changed, forever. I knew becoming a mother would be the best feeling in the world, but the idea of being a mother and actually becoming one are opposite ends of the feels spectrum. The best feeling in the world, but above all else, the blessing of creating life while simultaneously changing your own life is magical. 

When you're going into labor, the last thing you think about is: what could possibly go wrong? You don't think about the "what ifs," you think about the pain. You think, can I really do this?

My labor was textbook, to be honest. As was my entire pregnancy. Not a single complication out of either. I was told my son was perfect, and to expect to go past my due date considering he was my first. So, being a first time mother, it was music to my ears to know labor would be a week past the expected date of torture. But just like his mother, my son came like clockwork, although he did let me get in a nice cup of decaf coffee and some breakfast at my uncle's restaurant before he decided to tell me he was on his way. My water broke in a packed out restaurant. To add to my embarrassment, I got a standing ovation from every patron and a hug from all the regulars that knew me. Luckily, I felt no contractions or pain at all. My labor lasted all of 45 minutes, and then there he was—my perfect, beautiful bundle of handsome creation. My husband and I meshed together a beautiful mixture of us both. The hospital stay was nice, but once we got home, everything changed. My son was seven days old when I got the call that they needed to redo his PKU (the heel prick they do on newborns). Luckily, the state of Florida made it a law to do DNA testing to catch whatever diseases and genetic disorders early on. For the sake of the babies, and to start treatment as soon as possible for those with said diseases. We returned to the hospitals lab to poke his heel again. We went another six days, and as soon as my husband came in from work, my phone rang. The man on the end of the line asked to speak with both of us and requested I put my phone on speaker. Nervous as to what his business with us was, I put the phone on speaker and said, "Alright, we're all ears."

He introduced himself, then stated the reason for his call; to inform us that our brand new, perfect baby boy has a genetic disease called Cystic Fibrosis. I immediately busted into uncontrollable tears. The first thing I remember blurting out was, "Is my baby going to die?" He reassured me he was not 100 percent sure if he had it, but his heel prick showed an indication that he most likely had it. So my husband asked, "What do we need to do?" The man on the other end instructed us on what to do and set us up an appointment with him and his entire team of CF specialty people.

But first thing's first, my tiny baby had to undergo a sweat test. If you're not familiar, a sweat test is where you have your arms rubbed down with a solution and have a watch-looking band with wires and a wet pad stuck to your skin to collect your sweat and test the salt in your sweat, which tells them for sure if you have Cystic Fibrosis or not. Passing levels are 60. My son's level was 90 on both arms. It was confirmed that my baby has a genetic disease with no cure, one that has to be monitored for the rest of his life. I broke down. I handled everything I had to at the specialty hospital, went home, and broke down. I went through so many emotions. I felt like I had failed my son. I had never even heard of CF prior to this. Or so I thought. I had cared for two kids with CF. One of our best friend's kids have it, and I immediately called him after realizing he was the person I needed to talk to. Maybe he can help me cope. It helped a little, but not much. News like this is surely what could have sent me over the edge for PPD. Luckily, I had amazing support from family and friends. I did, however, get the PPA, and let me just say...the anxiety is just as bad as the depression—manageable, but rough, nonetheless.

After spending weeks doing nothing but getting into a routine with his new medications and schedule, as well as keeping up with the house and making sure not to neglect my husband, things started getting easier. My husband was my rock through it all. He always reassured me our son was okay and his care team is number one in the country. He was there when I needed to cry and there when I needed a punching bag. I gave myself hell for the first little bit of my son's life, not realizing it wasn't my fault. After studying for hours on end every day while my newborn was in between nursing sessions and breathing treatments, I came to realize: You choose your life partner. However, you don't choose them by knowing what medical issues your children may or may not have if you have children with them. Spending the rest of your life with someone includes the possibilities of bad situations. Choosing the right person is not always the outcome, but for me, it was. Coping with finding out my son has CF was rough on me, my husband, and our marriage, but we stuck together and trained on what we were told and studied it all. We knew what we were up against. We knew our life would be forever changed after hearing our son was different. But he is our little boy, and forever he will be. Although CF is a lot like cancer, I wouldn't trade trade the life I was given if I was able.

Learning your son is disabled changes you and your outlook on the perspective of life entirely and completely. My son taught me strength. Such a small baby fighting such a big obstacle that will never go away. And he's killing it! Now that's something to be proud of. Continuously counting my blessings, one by one.

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About the Creator

Brittany Bates

Stay at home mama, to a Cystic Fibrosis warrior. He is 21 months old, full of life, love & salt. Married to my best friend of 12 years, with one fur baby. Our story is just begining. Stay tuned!

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