Living with Cystic Fibrosis

14

Yesterday, Stephanie wrote about her daughter London’s infancy and diagnosis at 4 months with cystic fibrosis. Today, she shares what it’s like caring for not one, but two children with cystic fibrosis. 

CF-Awareness-Month-Cover-2014When your child is diagnosed with cystic fibrosis (CF for short), whether you like it or not, it changes every aspect of your child’s life – and yours. There are the obvious changes such as frequent doctor’s visits, bacterial infections, making time for medications, airway clearance treatments, taking along medications wherever you go, and managing food intake and weight gain.

But then there are the not-so-obvious changes. Changes you don’t see coming until they are upon you. It becomes frightening to learn too much about CF, because the stories are overwhelming and unbearable. Even attending a CF function, where you see children who are sicker than yours, elicits waves of guilt that your children are healthier; and a sense of foreboding that one day it will be their turn to be among the sickest.

Then there is the issue of having more children. It is heartbreaking to learn that each child you have may also have to face this disease.

What is even harder is feeling that this disease now has the power to make that decision for you.

Cystic fibrosis seeps into every crevice of your life, leaving no stone unturned.

After our daughter London was diagnosed with this disease at the age of 6 months, she began the medications she would need to take for the rest of her life. It took several months for her to become healthy again, but once her little body recovered from those first 6 months, a new normal set in. Life continued on, with both of us still working and London attending daycare. Her health was being maintained; and other than constant ear infections, she was relatively healthy.

My husband Travis and I talked about having more children. We knew we truly wanted at least one more child, so we took a leap of faith. We felt the odds were in our favor that we wouldn’t have another child with CF. I mean, after all, we had a 75% chance that this child would NOT have the disease.

When we conceived we were truly elated! We were offered a special ultrasound to determine if the same initial indicator (the gray area) that was seen in my daughter London would be seen in this baby. As the ultrasound progressed, the technician asked us if we wanted to know the gender of the baby. It was a BOY! We were overcome with joy!

Unfortunately, the gray area that was an early indicator of London’s CF also showed up in Nathaniel’s ultrasound. It was shocking, but we chose to let the joy of discovering we were having a boy override that shock, with hopes this indicator was wrong.

Nathaniel on the day he was born.
Nathaniel on the day he was born.

The rest of the pregnancy carried on fine; and on Jan. 15, 2010, we welcomed Nathaniel into our arms.

But things did not go smoothly. While still at the hospital, Nathaniel was hardly eating and spitting up with each feeding. He also wasn’t having bowel movements. A hasty ultrasound reveled that he had developed meconium ileus, a blockage of unusually thick and sticky meconium in the small intestines.

It was a sure sign of cystic fibrosis, and he was sent immediately to the NICU.

My heart SHATTERED into a million tiny pieces. How could this be? How could we have had another child with the same disease? I felt so guilty and hopeless. “Would he hate us for creating him?” I thought. I cried so much that upon leaving the hospital, my eyes were completely swollen. No one can understand the feeling of leaving the hospital without your child unless you’ve been there yourself.

At the time, I was completely devastated. But in retrospect, we were truly blessed. We had an outpouring of prayers and support! People we never knew and will never know prayed for the healing of our son. He only stayed in the NICU for 5 days! The staff said it was the fastest recovery they had ever seen! His meconium ileus had cleared up with medication, which meant there would be no need for surgery. We brought him home in a cute little outfit the NICU staff allowed us to keep.

My parents and Nathaniel on the day we got to bring him home.
My parents and Nathaniel on the day we got to bring him home.

Together, Travis and I decided I would not return to work. Not only did we have London’s extra care, but we also had Nathaniel’s; one of us needed to be at home to manage their care. At first, adjusting to giving medications to two children, doing manual airway clearance for both of them, and keeping up with countless doctor’s visits was more than I could bear. But life has a funny way of continuing, even when the future seems so cloudy.

What was certain in our life was we would not continue to have children. This experience was so overwhelming that we couldn’t imagine doing it again, not to mention putting another child through the rigors of CF.

As the years went by, it became obvious our children’s CF was more on the mild side. The disease can range from severe, with constant hospital stays and numerous lung infections, to mild cases where general CF care seems to keep children healthy. It is unclear why some children have severe, moderate, or mild cases, and it can not be predicted. Only time can tell.

We felt so fortunate. To this day neither London nor Nathaniel has been hospitalized or needed a feeding tube. They have encountered the occasional bacterial infection, but it always cleared up with strong antibiotics such as TOBI, which is an inhaled antibiotic specifically created for cystic fibrosis. Things were looking great for our future! The clouds had cleared.

That is, until May 28, 2012 (yes, I remember the day) when I had to take a pregnancy test. POSITIVE, read the test. We were now in the 1% of the population who get pregnant on birth control.

I couldn’t believe it. Yet again, we had to face this journey. I turned down every option for discovering if this child would also have CF. No special ultrasound, no amniocentesis. I didn’t want to know. I didn’t want to taint this pregnancy with unnecessary worry. Maybe I was in denial. Either way, we would know once this child arrived.

Right on schedule, Hailey arrived on Jan. 14, 2013. We took her home two days later and waited for the phone call that would tell us whether she too had CF. The children’s pediatrician called a week later and delivered the news. With a joyful voice he said, “NEGATIVE!” I cried tears of happiness. I cried right there on the phone with my physican and together we celebrated the news. In that moment he was more than a doctor, he was a dear friend who was truly happy for our family.

Today, our family is healthy, happy and whole. London and Nathaniel both take enzymes that help digest their food, as well as an antacid which allows the enzymes to work even better. In addition, both take a special multivitamin. Through the nebulizer, London takes a medication called pulmozyme, which zeros in on the DNA that tells the body to create more thick sticky mucous. This treatment is so important because it helps the body keep the mucous thin and loose, which benefits the entire body.

London and Nathaniel "doing their vest." Each of them wears an inCourage vest for about 30 minutes each day to keep their lungs free of mucous. London also takes medication through a nebulizer.
London and Nathaniel “doing their vest.” Each of them wears an inCourage vest for about 30 minutes each day to keep their lungs free of mucous. London also takes medication through a nebulizer.

London and Nathaniel each have their own inCourage vest, which is a special garment they wear each day for about 30 minutes to help keep their lungs free and clear of mucous.

The solace I find in having two children with CF is they will always have each other to understand exactly what the other one is going through. I pray that when one needs encouragement or a shoulder to lean on, the other will be able to provide it.

I am so thankful to London’s and Nathaniel’s care team at Palmetto Health Richland. Dr. Trey Brown and his team have done a phenomenal job of taking care of their patients.

I am also thankful to all of the individuals at the Cystic Fibrosis Foundation for their never-ending research and dedication to this disease. On May 17, I will walk with Great Strides to help support every individual with Cystic Fibrosis and to help the Cystic Fibrosis Foundation on their quest for more research and maybe one day a CURE!

When we first received London’s diagnosis 6 years ago, I thought my dreams for my children were over. But despite the thorns that life with CF brings, my family has had its share of roses too.

 

 

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Stephanie never pictured herself as a mother to multiple kids, but now that she’s “that mom” she couldn’t feel more blessed! Her stay-at-home mom days aren’t always easy, but she believes parenting gives us the opportunity to heal, change, and grow more spiritually aware. She loves reading, writing, and discussing topics related to soul searching and how to get past our own personal struggles, as well as the History channel….you know, the fast life! Stephanie is the mother to three active children, ages 6, 4 and 1, and has been married to her husband Travis for 6 years. She enjoys all the city has to offer for mommy’s and children, including group play dates, playgrounds, and lately the gym, where she can get fit and the kids have an opportunity to play (a win-win!). Having lived in Columbia for the past 19 years, she considers herself a native at this point.

14 COMMENTS

  1. Stephanie- is the vest used in place of the older thumping therapy? I read up on the link you provided- but I didn’t see anything about if this was a replacement or in addition to.

    • Thanks for asking! Yes Megan that is correct. When Nate and London were younger I used to cup my hands slightly and pat their back, their sides around the lung area and also the front of their chest. The vest replaces me having to manually deliver CPT. And its awesome!!! Can you imagine how tired my hands would be after doing two children!

      • That is amazing. I am sure many people are grateful for it’s invention.

        I remember a device of a similar use that was put on my feet and legs when I had my C-Section with Lily. At first I thought it was silly, but with my somewhat expansive knowledge of the dangers of blood clots (my dad and sister both passed away from one..) I left them on and got over the funky noises.

        Huge fan of medical advances like these. 🙂

        • Exactly! London and Nate’s machine is quite noisy as well. We have to turn the cartoons up really really loud when they are on!

    • The best feeling in the world! Words don’t even accurately describe the feeling! Relief may come close!

  2. So eloquently written. God created you to be their mom and he knew you were the perfect person to take care of them. You are such a great mom! Thanks for sharing your story!

    • You are so welcome! I am sorry to hear your son also has CF. Does any of this resonate with you as well as being a mother with a son with CF?

    • Thank you Alexa for reading! Its really the first time I’ve shared our story but it was very healing to do so.

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