Baby Nora, Whose Mother has Cystic Fibrosis – Atlanta Newborn Photographer
I had the honor to photograph this little miracle baby for her newborn photos, and it was one of the most special and meaningful photo sessions I have ever done. If you know me, you know that my two professional passions are Cystic Fibrosis (CF) and photographing newborns.
I am a pharmacist and I have spent more than 15 years working with CF patients and managing their medications at Children’s Healthcare of Atlanta. Cystic Fibrosis is a genetic disorder that causes the build up of mucous in the lungs, and it also affects the digestive system and other organs. A few years ago, I took care of Caroline. She was a teenager when she developed a very rare (at the time) infection that none of us knew how to treat. It was a very difficult time, and we were not sure if she would survive it. We had to contact experts all around the country to help manage her infection.
Fast-forward a few years, and our paths crossed again when I found out Caroline was having a baby. To see her thriving, living a fulfilling life, and preparing for motherhood after she had been so sick was a true miracle. Patients with Cystic Fibrosis are typically unable to have babies, so holding this tiny little baby in my arms and seeing Caroline as a healthy brand-new mom was so moving. I asked Caroline to share her story- and this is what she wrote:
“When I was born and diagnosed with Cystic Fibrosis 28 years ago, the doctors told my parents I would never live a “normal” life. But for the most part, aside from the handful of medications and breathing treatments that I did each day, I felt “normal”. However, that all changed when I became a teenager. When I was 16 years old, I was in and out of the hospital for months. I couldn’t seem to stay well, despite the countless treatment methods we tried. I was eventually diagnosed with mycobacterium abscessus, a rare (at the time) lung infection (turns out, it is much more common in the CF population than originally thought). And here’s the thing about Cystic Fibrosis: it knocks you down when you least expect it, when things seem to be going well, when it’s just plain inconvenient. For many years, I spent about 3 months out of every 12 receiving intravenous antibiotics, the side effects of which were arguably just as horrible as the symptoms of the lung infection itself. Despite this, I was determined to continue living as “normal” of a life as possible. Senior year of high school, I started dating the man who would later become my husband. I went to college. I had a social life. All while managing a disease that threatened every day to take all of this away from me.
In 2017, I married Sean. We had been dating for 6 years, and he stuck by my side during some of my sickest days. Although we were only 23 when we married, we had already had those difficult conversations, the ones that you have when choosing to marry someone with a terminal illness. We had both always wanted to start a family someday, but didn’t know what that would look like, or if it was even going to be possible with Cystic Fibrosis. We agreed we would cross that bridge when we were ready.
In 2018, I began taking Symdeko, a medication that aimed to treat the cause of Cystic Fibrosis (abnormal movement of salt in and out of cells), rather than merely treating the symptoms of CF. It was literally a miracle drug. A year later, I began taking Trikafta, a drug developed with the same goal as Symdeko, but with even better results. Since starting Symdeko in 2018, I have not had to be hospitalized for treatment! I have been able to gain and maintain my weight, which is a huge struggle for much of the CF population, my lung function has remained stable, and I have not had any lung infections requiring IV antibiotics.
In March of 2021, one of my biggest dreams, that I wasn’t sure would ever be a reality, came true. I got pregnant with a baby girl. Nora was born healthy on December 6, 2021. Being a mom is better than I could have ever imagined! I am forever grateful for the miracle of Trikafta that has given me the opportunity to fulfill my dream of becoming a mom and the hope for a future where I get to watch Nora grow up and fulfill her dreams.”
This new medication, Trikafta, is changing the face of CF. It is allowing people living with CF an opportunity for a “normal” life and to dream of a future. Seeing the transformation in these kids taking the medication is encouraging, exciting, and thrilling. For these kids to grow up and have the opportunity to have a family, hold their babies, watch them grow and have hope for their future, is nothing short of a miracle.
To learn more about CF visit the CF foundation website. and you can donate towards finding a cure.
Please contact me to document this special, fleeting moments – time just goes by so fast. Book your photo session a few months before baby is born to assure availability. If baby is already here, contact me for some last-minute availability!