This is part of the Everyone Has a Story Series. I am inviting readers to share a story from their lives with others and so far the stories have been amazing. You can read more of this gifted writer’s posts over at her blog Filled to the Brynn.
“Huff cough and spit, then hurry – brush your hair and teeth.” These words I say every day, every morning as we rush to get ready for school. My daughter untangles herself from tubes that go into what looks like a life preserver, and unplugs her nebulizer. Most kids don’t have to do a half hour breathing treatment plugged into 2 machines every morning. Most moms don’t tell their kid to huff cough before school, and I didn’t even used to know what a huff cough is. I also didn’t know what CF is, and maybe you don’t either.
12 years ago I was pregnant with my first child. I was 23 years old, and my husband and I were surprised in February 2003 with the news we were expecting a baby. The weekend before we found out, we actually had gone snow tubing on a romantic weekend away in Berkeley Springs. We spent the night by our cabin’s fireplace talking about the home we were saving for, and the 5 year anniversary trip we’d take to Italy. I was a social worker who had just started graduate work in Counseling, and Kevin worked for a payroll company in sales. We were young, 23 years old and married for a year and 1/2. We were filled with hope for our future. A few days later, finding out we were pregnant, our shock quickly gave way to joy and we started planning for a different future, happily.
During my pregnancy I refused all testing, and as a naive young mom-to-be I thought our baby would be perfect. Sure every once in awhile I wondered “what if” this or that, but really I didn’t worry too much. I’d enjoy the ultrasounds, which I had more frequently than most because of a blood condition they thought I had. Once we found out we were expecting a girl, the biggest question on our minds was what should we name her. We never once wondered instead how long would she live.
Bailey Caelyn was born at 10:53pm after an emergency c-section and 30 hour labor. They had to knock me out for the birth because I was dry heaving and they had to get her out immediately. I wasn’t awake until she was well over an hour old. I fought to keep my eyes open to assure the nurses I wasn’t still loopy so they would let me hold my baby. I cry just thinking about those first moments as Kevin handed her to me, tears in his eyes, and I couldn’t believe she was mine. She was here, I was a mother. My precious baby. The first thing I noticed about her was she had her dad’s ears. I fell in love hard and fast. She was perfect and I just couldn’t believe that what I had wanted most in life – to be a mommy and especially to a little girl – had happened. I felt like the most blessed woman on the planet.
Bailey had jaundice and had to be hospitalized again at a few days old. I remember going nuts (also, hello, my hormones were crazed) because they had to put a line at the top of her head because they couldn’t get a vein elsewhere. My poor baby was almost purple from the crying. I felt so sorry for her, and sorry for myself. I wanted to be home with my new baby, with our biggest challenge being my nipples hurt from breastfeeding. I stayed awake all night, staring into her lit-up bassinet, eating Snickers bars and praying. This was the first time I remembered feeling deep fear for the health of my child. Suddenly, the horror stories that you read about, or remember hearing such as someone losing their baby to SIDS or choking, or a tv falling on a toddler…these stories became so real in my mind and heart and I felt trauma for people I didn’t even know. Little did I know, that in my daughter’s body was a disease that also killed.
Once home and jaundice free, my girl and I started to navigate our new life together. I was a stay at home mom and although we had the typical days and nights confused, really I don’t remember anything else but bliss. I really don’t. Bailey was a very easy baby, and I was in love with being a mother. Kevin was a wonderful father, even helping in the middle of the night. I didn’t have postpartum depression and nursing was going really well. I felt like I had become the person I was always meant to be.
When Bailey was a few weeks old, I got a phone call from our pediatrician’s office. I was laying on the floor next to Bailey. The receptionist said that Bailey’s heel prick test had come back “flagged” for CF. What is that, do you mean CP? Cerebral Palsy?!! I sat up, panic and fear gripping my chest. No, she said. Cystic Fibrosis. What is that?! I screamed, tears already starting. She couldn’t tell me, she didn’t really know either. Mostly a lung disease is what I think she said but by then who knows, should could have recited the Gettysburg Address and I wouldn’t have heard. She told me Bailey had to have a sweat test done (what the hell is that?!) and then we’d know more.
So off my mom and I went to get Bailey’s first sweat test done. I remember nursing her in our brand new minivan in the parking lot of the hospital. I changed her diaper and off came her umbilical cord stump. I remember wondering if people save things like that, do you just throw it away? I did but it saddened me. We went inside, and they put what looked like a cloth tape band around her arm connected to a few thin tubes and a metal circle. They assured me it wouldn’t hurt her, just would vibrate and collect the sweat to measure the salt level. Well my baby that never cried screamed bloody hell, and my mom and I both cried right along with her. That test came back “inconclusive” so off we went for another. Also inconclusive. Then off to CHOP for ANOTHER. In the meantime, Kevin and I had a blood test done and found out we were both carriers. I remember standing in our condo kitchen, looking out the window when I got the call that Kevin was a carrier too. I remember the fear, and the grief, and the wondering what this meant for the future of our family. Already I had learned that if you and your spouse are each a carrier, with each child there is a 25% chance of having CF. Our whole life and what we had always imagined, was changing. Cystic Fibrosis is a scary disease. Basically, it is a problem with the fluid in your body, which surrounds all of our organs. You and I have thin spit like fluid – a CFer has thick mucus. The defective CF gene causes the fluid to become hard and sticky, which makes it attract bacteria like a tar pit in the lungs, leading to serious lung infections. It also makes it so normal organs can not function properly. Instead of the fluid acting like a lubricant as it’s supposed to, the thick mucus blocks tubes and passage ways. Most CF people have digestive problems, which range from being “pancreatic sufficient”, taking enzymes pills before they eat – each and every time – so they can properly digest their food. Thank God for modern medicine, as just a few generations ago these children died from malnutrition and no one knew why. They’d eat and eat and eat and waste away. Or, as my daughter is, you have a “pancreatic sufficient” body meaning you can break down the food, but many times these patients then have an opposite problem and they get blockages, which can even lead to surgery. Some times before a baby is even born you can see a blockage on the ultrasound, and that baby will have to have lifesaving surgery when he is just hours old. It’s a very involved, very complicated, very confusing, very varied, very scary multi-level disease.
After Bailey’s 3rd inconclusive sweat test we had her blood tested (a much more expensive test but 3 sweats warranted it). Her sweat tests had all shown low-borderline numbers, meaning she could just be a carrier or she could have the disease. Her blood test was conclusive and she had both of our mutations. The nurse from CHOP called me, a very nice woman who maybe now can not hear out of one of her ears from my crying and yelling. The crying because I was devastated and full of fear. The yelling because she said to me, “If I had to have CF, I’d pick Bailey’s mutation.” She meant that in a way to calm me but it infuriated me.
At this time Bailey was 2 months old. Her baptism was for that weekend. I remember how beautiful she looked in her gown that her godmother had bought her, and I remember our prayers, our begging of God to please bless our baby with health. Everyone always says, “All I want is a healthy baby. I don’t care if it’s boy or girl, all I want is for it to be healthy.” That statement pains me each and every time I hear it, with a smile on my face that takes all the will in the world. I want to ask, “and what if not? What if that’s all you want but what you get is a sick child? A child with a disease that could kill her?”
Bailey’s first year is a year I will regret for the rest of my life. I held my breath each day, waiting for the other shoe to drop. What a JOY of a baby she was, and I was sick in my grief, and sick with worry that my plump, healthy appearing child would get a lung infection and get sick. I spent night after night reading anything I could get my hands on pertaining to her specific CF mutation. Because this was 11 years ago, there wasn’t a lot besides the CFF website and medical research journals. Facts. Depressing, make you feel like vomiting kind of facts. The knowledge of how CF people died was like a nightmare that invaded my every moment. Here was my delight of a baby – who was chubby and rosy cheeked, the picture of health – and I missed the joy because my heart was so fearful. How I wish I could go back to that year and soak up the moments that I lost. When she weaned herself from nursing at around 4 months old (she fell in love with the bottle because she had to have salt, so we’d give her a bottle a day with salt in it) I hit an even lower low. Pumping was terrible and I developed 2 infections that were extremely painful. My husband begged me to stop and just give her formula. I was convinced that she was thriving because she was getting breastmilk and was petrified that if I gave her formula she’d turn into a sickly CF baby. One night, I sat in the shower crying hysterically. Kevin knelt down and said I had to stop, that her getting formula wasn’t going to be the problem, it was her having a mess for a mom. He said it so gently but it put a mirror to myself that horrified me. He was right, she deserved better. The next day, as I nursed Bailey because she was basically asleep and didn’t fight it, I had my mom take a picture and I knew it’d be the last time, and I was going to stop trying to pump.
But even with getting formula throughout the next several months, Bailey’s health remained. No one would ever know she had a devastating illness. I kept waiting for “the other shoe to drop” but it didn’t. Twice a day she received “treatment” which consisted of putting a mask on her face with 2 puffs of an inhaler. Thank God for Kevin, because he administered this medicine. It took Bailey a long time to not be scared of the mask, and she’d hold her breath and kick her little legs, her face turning red. Finally she’d cry and he’d puff the inhaler as I usually cried and stroked her head as I looked away. Then she’d get her “boppies” done, when we’d lay her on her Boppy pillow across our lap and use a little soft plastic cup device to thump her all over her back and chest. The point was to loosen the mucus in her lungs, the thinner the mucus the less likely of an infection. She usually did great for this, and fell in love with Baby Einstein shows which we let her watch during treatments.
When Bailey was 15 months old we found out we were expecting her sister. Her conception was a miracle as we were trying to prevent another pregnancy. We hadn’t yet decided what to do about future children. Again I refused all testing and prayed hard she wouldn’t have CF. Taylor Elise was born in October, 2 years and 4 days after Bailey. Bailey took to being a big sister like a duck to water. Never was there a more kind, more loving Sissy. Taylor’s screen test did not come back flagged, but we had her blood tested to be sure. She came back as a carrier of the R117H mutation. Someday Taylor will need to think about what that means for her future family, especially if her husband finds out he is a carrier as well.Interestingly, there has been a lot of research as of late concerning “symptomatic carriers” of CF. Carriers of CF can in fact have some symptoms of the disease, but without the long term serious health effects. We saw this materialize in Taylor, as when she was young she actually got sick ten times more often than Bailey! Her cough would linger forever, and we would give her breathing treatments just as Bailey had, when she was sick. Thankfully though, God had a hedge of protection around Bailey and she usually did not catch what Taylor would have. Bailey’s biggest struggle as a baby, toddler, young child was that she had severe constipation, even requiring enemas, which was terrible. But gratefully, we always avoided a “clean out” at the hospital and Bailey avoided being hospitalized for anything until she was 10 years old.That’s when the other shoe dropped.to be continued…