Parenting a child with cystic fibrosis is very new to me and my partner, Ryan. Our daughter, Audrina, is 6 months old and was diagnosed with CF shortly after birth.
Audrina’s experience with CF has been somewhat atypical, and she has had a rough start in life so far. We are still figuring out how we can support our daughter on this journey, and what we hope to teach her about her diagnosis. But she has already taught us so much more than we could have ever expected about resilience, strength, and hope amid adversity.
In my third trimester of pregnancy, Ryan and I found out that Audrina had dilated bowel loops, indicating a potential problem with her intestine. The doctor couldn’t tell us much more about it at that time — it was too early to know what was causing the issue or what kind of treatment would be needed. After a few weeks of monitoring and discussion with the doctor, it was determined that Audrina would need to go into surgery after her arrival. While we were sad and scared, we were at least thankful for a little time to mentally prepare ourselves for what was to come.
Once I was full-term, the doctor decided to induce me so Audrina’s intestinal issues didn’t continue to worsen. So, we went to the hospital and our precious baby girl was born. Her surgery took place the following day, so we spent the first day visiting her in the NICU, holding her, and soaking up time with our sweet new baby.
After surgery, the doctor found that the cause of Audrina’s dilated bowel loops was something called meconium ileus. This occurs when a baby’s meconium, or first bowel movement, is very thick and sticky, and blocks part of the small intestine called the ileum. In Audrina’s case, the blockage was so severe that her bowel had twisted and perforated, which can be extremely serious. Hearing that, we were grateful that we delivered our baby when we did and that the surgeons were able to intervene.
The doctor then explained that meconium ileus is often caused by cystic fibrosis. Over the next few days, some tests were run, and Audrina was officially diagnosed with CF. Ryan and I were shocked. Neither one of us had any idea we were CF carriers, and we didn’t know what this diagnosis would mean for Audrina’s life. However, after speaking with many doctors and nurses at the hospital, we learned about the incredible medicine and treatments that have recently become available for many people living with CF. This was a great relief to hear. We knew the journey wouldn’t be easy, but we felt confident in what the doctors had told us, and that Audrina had the best chance possible at a long, healthy life.
A few days after her diagnosis though, Audrina became very sick. She was having trouble breathing and her white blood cell count was high, indicating that she may be fighting off an infection. The doctors decided she needed to undergo a second surgery so they could see what was going on. Audrina’s room became flooded with people coming in and out — nurses, doctors, and surgeons all explaining what was happening and getting our consent. Suddenly, her vitals started to crash. It became apparent that this surgery — which was already urgent — was now becoming an emergency. The doctors were able to stabilize Audrina before surgery and gave us a minute alone with her. Staring into my daughter’s eyes, I was so afraid that this may be the last time I would see her. We wished Audrina good luck, then off she went, into the operating room and the hands of her doctors.
By the grace of God, Audrina made it through the surgery. It was discovered that she had a good amount of infected bowel, likely caused by the perforation she experienced in utero. The infection wasn’t evident during the first surgery, but it certainly was now. We were told the road to recovery would be long, and indeed it was. Audrina was transferred to a higher-level NICU for more intensive care, where we experienced subsequent surgeries and lots of ups and downs along the way. It was truly an emotional roller coaster. Finally, after almost four months, we took our baby girl home for the first time. Ryan and I were ecstatic to have her home and see her experience life outside the hospital.
Today, Audrina’s journey to good health is still a work in progress. She is 6 months old and recently had a fifth surgery. But we are incredibly thankful she is headed in the right direction and has come so far from where she once was.
As we settle into life at home, Ryan and I have talked about the things we want to instill in our daughter as she gets older and begins to learn more about her disease. The most important thing we want Audrina to know is that her battle with CF does not define her. There’s no denying that treatments, medications, and doctor’s visits will be a regular part of her life. However, she is so much more than her diagnosis. She is smart, beautiful, and strong. As she grows, she will have hobbies, interests, and goals like anyone else. And with the way that the future is looking for people with CF, there’s no reason she shouldn’t live a long, healthy life and do whatever she sets her mind to.
And while there are many things we hope to teach Audrina someday, she has already taught us more than we ever could have imagined. We had no idea a little baby could be so strong and resilient, despite all the challenges she has faced. We are so grateful for her fighting spirit and pray that she will use it throughout her life. We couldn’t be prouder to be her parents.
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