Hearing the words cystic fibrosis can be a lot for first-time parents — or any parent. In the fall of 2019, my husband David and I showed up for an OB-GYN appointment. I was about 11 weeks pregnant when my doctor told me I was a cystic fibrosis carrier. My doctor explained we would need to find out if my husband was a carrier as well to see if it was possible that our child could have CF.
We scheduled an appointment with the genetic counselor, and my husband had some blood work done. About 10 days later, I got the call that confirmed my husband was a CF carrier as well. When I told my husband, he was super positive and tried to comfort me, saying everything would be OK and there was nothing to worry about.
We chose not to share this news and chose to wait until the birth of our child to find out. Deep down, though, a mother knows! Throughout my whole pregnancy, I knew deep in my gut that my child would be born with CF.
Fast forward to April of 2020 when the whole world was on lockdown for COVID-19, and I was going into labor as a first-time mom. Let me tell you, having a baby during COVID was quite the experience. When I was admitted, my husband and I were given clear rules of what was and was not allowed. We were required to always wear a mask — try being in labor while wearing a mask and having nurses get mad if they catch you pulling it down to breathe during a contraction. Thankfully, I had an amazing nurse named Connie who was my saving grace and would allow me to take my mask off when she was around, as well as my wonderful OB-GYN, Dr. Giron.
During labor, my husband and I would constantly tell the medical staff that we were CF carriers. Even though we knew we wouldn't find out instantly if our son had CF, it was like something in our brains couldn't stop sharing that information in hopes we would get an answer. After 52 hours of labor, I was rushed in for an emergency C-section. Due to COVID-19, my husband was not allowed in the operating room or recovery room with me. Once our son Parker and I were allowed to leave recovery, we made our way to my husband, and he finally was able to meet our son for the first time.
The first 24 hours with Parker seemed to be going mostly well. We still would let every staff member know about us being CF carriers, and we watched Parker’s every little breath and movement to see if we noticed anything that didn't seem right. We started noticing that his stomach seemed a little bloated, but because he had had a tiny bowel movement, it wasn't a huge concern at first. The hospital listened to our concerns but also wanted to send us home as soon as possible because of COVID. A few days later, they were getting the discharge papers ready. Before discharge, one doctor decided it would be best to order an X-ray for Parker due to his bloated stomach. When the X-ray came back, everything was normal, and we were discharged within an hour.
Once we got home that night and settled in, everything went downhill. Parker started throwing up green. Something did not seem right, but thankfully Parker already had a doctor's appointment scheduled for the next morning. My husband luckily saved the burp rags from the whole night that were covered in green. I can still see that green color in my head five years later.
Once again, due to COVID-19, only one parent could be in the appointment with our son that morning. My husband took Parker to the appointment and showed the doctor the burp rag. The doctor instantly sent my husband and our 3-day-old son to radiology.
Parker was then admitted and transferred to our hospital in Los Angeles where the CF clinic is located. He was taken in for emergency surgery due to meconium ileus and received an ileostomy bag. Even though we didn't have confirmation of a CF diagnosis yet, that was confirmation enough. The CF pulmonologist did eventually confirm Parker’s newborn screening came back positive for CF at 10 days old.
Those days in the NICU were filled with learning how to give our 10-day-old Creon with applesauce, NG tubes, ventilators, visiting Parker one parent at a time, lots of tears, and making sure to fight as hard as possible.
Being a first-time parent to a child with a life-threatening disease can be difficult at any time — but add COVID-19 into that mix, and it throws you a whole other curve ball. With Parker being in the NICU and having multiple surgeries in the first couple months of his life, the COVID protocols made that time harder than it should have been. Even with all those obstacles that kept trying to get in our way, there was never one second that we were going to let CF win. We were ready to fight from the start!
Fast forward five years later — Parker has had eight hospital admissions, multiple surgeries, hundreds of doctor's appointments, and has been pulled off Trikafta due to side effects. But those things are just a small part of his journey. Parker started swimming lessons when he was 13 months old, and also started swallowing pills at that age. And now, at 5 years old, he can swallow 11 pills at once! He plays ice hockey with kids that are older than him, absolutely loves going to Disneyland, and is the best big brother to his little sister, Abigail!
I'm here to tell all the parents, grandparents, and friends of someone with cystic fibrosis that even on the darkest days, there is so much light that CF brings! My husband was right when he told me that everything would be OK and there was nothing to worry about. Cystic fibrosis was always part of our family’s plan in life, and I'm proud to fight for Parker and everyone in the CF community daily! The strength my 5-year-old shows daily makes him my true hero!
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