The Two Week Wait // Cystic Fibrosis Newborn Screening

While I was pregnant, I worried CF would be a dark cloud over my birth experience.  Would I be able to stay present?  Would it fill one of the happiest moments of my life with fear?  I'm really thankful to say it didn't.  When Caroline, in all of her squishy purple glory, was held in front of me for the first time my heart felt nothing but complete joy.

The first time I really thought about CF after Caroline was born was when a nurse came to do her newborn screening in the hospital.  Since 2007, the newborn screening in Ohio automatically tests for the most common mutations of CF in babies.  

They pricked her heel to draw blood for the test and she cried in my arms.  Fear washed over me as I thought about what they were testing for and realized the wait for her CF results had begun.

For the next two weeks, everything Caroline did or didn't do I worried about, which is a very typical new parent thing to do but every fear was heightened with, "Is this a CF thing or a normal baby thing?"

At Caroline's first check up, about 5 days after she was born, we were told she had lost 10% of her body weight in the hospital.  That was a bit high but not abnormal.  Her doctor was concerned though because she still wasn't gaining any weight so he pushed us to feed her every two hours.

Several days later we went back to the pediatrician for a second weight check.  Caroline had been eating nearly 30oz a day, well over the 14oz a day she needed to gain weight. We were hopeful when we put her on the scale...but she still hadn't gained anything.

We didn't know it at the time but CF was already at work in her body.  CF makes it difficult to absorb nutrients and pull calories from food, causing a common CF symptom called "malabsorption" and eventually "failure to thrive."

Still waiting for our newborn screening results, we continued feeding her every two hours day and night.  Those first two weeks it felt like we were always at the doctor's office and always faced with the fact that she wasn't gaining weight, that something was wrong.

At her fourth or fifth weight check, my mom came along.  Ty and I laid Caroline on the scale and held our breath as we waited for the numbers to show up on the screen.  6lbs 12oz.  She had only gained a couple of ounces....

I felt my chest start to get tight, I was afraid.  I knew something was wrong.  She was eating so much...why wasn't she gaining weight?

I picked Caroline up from the scale with a heaviness in my heart I'd never felt before.  I noticed my mom looking at me as I held Caroline tightly to my chest and tears rolled down my face.  I felt so, painfully, helpless.

My mom asked the doctor a difficult question she knew I wanted to ask but was unable to say out loud, "They have been waiting for the results of the Cystic Fibrosis screening and they're worried what's happening is related to Cystic Fibrosis.  When will you have the results?"

I could sense a heaviness in the air between myself, Ty, my mom and the doctor.  We were all waiting on the results but none of us had spoken out loud that the symptoms of CF could be staring us in the face.

With compassion he turned to me and Ty and said, "We want Caroline to be gaining more weight, but this is not strangely uncommon in newborns.  Some struggle more than others to gain weight.  I still haven't gotten your results back yet and I've been checking for them every day.  I'm actually a bit frustrated we haven't received them yet.  I've been having my nurses call daily to check on the results but the state is running behind in returning Cystic Fibrosis screenings this month."

We went home that day feeling better knowing this wasn't completely abnormal but I was still worried because a few other "red flags" had gone off during those first few weeks.

Caroline didn't have a bowel movement for nearly four days after we came home from the hospital.  Odd? Yes. Concerning?  Not really.  These things happen to healthy babies as well.

As my milk came and Caroline was eating more, she started spitting up large amounts immediately afterwards.  We tried everything to help her.  We kept her angled while she ate, burped her, held her upright after eating - she still spit up nearly everything.  Could this be a normal baby reflux symptom? Yes.  Could this be CF?  It could be.

When Caroline was about a week and a half old I was up at 3am for one of her feeds.  We were sitting alone together in the dark on the bed.  Ty was asleep beside me.  I looked down at my perfect, sleeping baby.  I was overwhelmed with love for her and at the same time overwhelmed with worry.  We were already do everything we could think of to help her grow and thrive but it wasn't working.

I started piecing together all of her symptoms in my head with what I knew about CF.

CF causes malabsorption and makes it difficult for babies to gain weight....CF causes reflux in most CF babies....CF messes with a baby's bowels causing them to not digest food properly giving them irregular bowel movements.

It was in that quiet, still moment, wrapped up in these symptoms, surrounded by love for my daughter and fear for her life, that I realized my baby girl had Cystic Fibrosis.

Note: I don't want to cause alarm in parents if your baby had some of these symptoms.  I hope I conveyed many of these symptoms could be totally normal.  Also, many states automatically test ALL newborns for CF, Ohio has tested babies for CF since 2007.  If you're interested in finding out if you are a carrier of CF, talk to your doctor or check out 23andme DNA kits.