My son Anthony is a very vibrant 9-year-old who enjoys learning about the world around him. He is just like any other child; he started to display cystic fibrosis symptoms at birth. Despite his illness, he has a fighter spirit. What is Cystic Fibrosis? Keep reading to learn more about cystic fibrosis and the different cystic fibrosis treatments that help combat this disease.
The life expectancy for cystic fibrosis is currently 56-65 years old.
“Cystic fibrosis is an inherited disorder that causes severe damage to the lungs, digestive system, and other organs in the body.”
-Mayo Clinic
How do you get cystic fibrosis?
You can only have cystic fibrosis if you inherit the CF gene from both parents. In this case, his father and I unknowingly were carriers of the Delta f508 mutation.
I am Dominican, and Anthony’s father is American. It is rare for Dominicans to carry this gene, which astonished the Doctors at Nemours.
We learned we had the gene after we got labs on each of us to determine how Anthony inherited his cystic fibrosis. Anthony began to display cystic fibrosis symptoms from birth.
“There are about 30,000 people with cystic fibrosis in the United States, and approximately 70,000 people worldwide. Approximately 1 in 30 Americans is a carrier.”
-American Lung Association
The Day Anthony Was Born Was The Scariest Day For All Of Us
Anthony’s Story begins in the hospital on the day he was born, April 15th, 2014. Every parent is delighted when their child is born, and it’s usually the most exciting day of their lives.
However, it was a terrifying day for his father, Anthony’s siblings, grandmothers, and me. Anthony’s two older siblings from our previous relationships are his big sister, Ginipher, and big brother, Rudy.
Although they do not have cystic fibrosis, they may also be carriers of the gene mutation that causes cystic fibrosis if they marry someone with the gene. Lab testing is crucial to ensure their future significant other does not carry this gene before having children.
They were both eager to meet Anthony but sadly could not. Holding down formula became difficult for poor Anthony, and he could not stop vomiting his feeds.
The reason that led to this problem was a bright echogenic bowel observed in a sonogram.
About Echogenic Bowel and Meconium Ileus
When I was 26 weeks pregnant, my Doctors did a sonogram, and they saw that Anthony had an echogenic bowel.
An echogenic bowel is one of the first cystic fibrosis symptoms that are discovered to be a possibility during the third trimester.
“An echogenic bowel is when one or more areas of the bowel are as bright as the nearby bone on the lowest gain setting.”
-Mayo Clinic
Therefore, when dear Anthony could not hold his formula down, the doctors instantly knew that cystic fibrosis was a considerable possibility.
Upon researching, I learned that the echogenic bowel leads to thickened meconium ileus, which results in the first stool being dark and sticky.
“Cystic fibrosis is associated with echogenic bowel, as abnormal pancreatic enzyme secretion leads to thickened meconium and subsequent meconium ileus is observed in some newborns with cystic fibrosis.
There are different varieties of cystic fibrosis. Anthony inherited the DeltaF508, which affects both lung conditions and causes poor weight gain.
G-tube Placement for Weight gain Support and Night Feeds
Anthony spent the first two months of his life in the hospital in Nicu, fighting for his life. After he left the hospital and was discharged home in June, he caught MRSA and pneumonia, landing him in the hospital once again for two months.
This time, Anthony stayed at Nemours Hospital in Lake Nona. During his care, his incredible CF team monitored his symptoms closely.
Anthony is still under the care of Dr. Livingston and his amazing CF team at the Nemours Children’s Hospital in Lake Nona, Orlando, Florida. He is astonished to see how well Anthony is doing today in the care routine they prepared me to follow.
My little warrior fought hard for his life and did not give up without a fight. He thankfully beat the pneumonia and MRSA.
Anthony got his G-Tube as a baby, and it was a part of his cystic fibrosis treatment to help his nutrition.
Why do Some CF’ers Need a G-tube?
At two months old, Anthony displayed an urge to eat and did not like the nasal gastric tube placed in his nose.
He took it out three times, leaving the doctors astonished! He wanted to eat by mouth and loved to eat a lot. However, his weight gain was still poor and below the fifty-fifth percentile.
The Nemours team in Lake Nona, Florida, placed a G-tube in Anthony’s stomach when he was three months old to help him gain weight.
They explained to me that children with cystic fibrosis experience poor weight gain issues due to the thick, sticky mucous in their body, causing malabsorption.
It is another cystic fibrosis symptom that many children and adults with cystic fibrosis live with. The mucus blocks the body’s ability to absorb critical nutrients and fat in the intestines, therefore causing multiple problems, including:
Slow growth, Poor digestion, Weight gain problems, and greasy bowel movements are part of cystic fibrosis (Nemours Kids Health, 2024).
Anthony’s G-tube Placement was a Difficult Adjustment
Thankfully, with the G-Tube Dr. Sandler placed, he was able to come home after one month in the hospital.
Everyone was so excited the day Anthony was able to get a G-tube. (image of a g-tube) A high-profile Mickey button feeding tube would be far less noticeable and easier to manage.
I learned how to change his g-tube with the nurses at Nemours and have changed it ever since. Anthony is older now and realizes that needing a button is another cystic fibrosis symptom that he would have to live with.
Sensory therapy is an excellent way for Anthony to cope on hard days. Adding this to his cystic fibrosis treatment plan made it a Godsend for Anthony’s weight gain journey.
CPT Therapy and Vest Therapy Treatments
According to cff.org, “CPT is an airway clearance technique that involves clapping, vibration, deep breathing, and coughing to remove mucus from the lungs.”
CPT therapy became an important part of Anthony’s cystic fibrosis care. At age three, he was given a smart vest to help remove mucus from his lungs. Mucus is a cystic fibrosis symptom that occurs due to
Although adjusting was difficult, Anthony learned to do activities with his vest therapy, making it more enjoyable. Part of Anthony’s cystic fibrosis treatment plan was to have CPT therapy done 3-4 times a day.
Now that he is older and uses his vest twice daily, his lung function has greatly improved.
Severe Dairy Allergy and Intolerance to Relizorb Cartridges Caused Issues for Weight Gain
Another obstacle that Anthony has had to overcome is his allergy to dairy products and his Relizorb cartridges for night feeds via g-tube.
His doctors still don’t understand his allergy breakout to the Relizorb carts, but they sense that an additive that mimics an ingredient found in dairy could be to blame (however, it is still unproven, and the carts work great today).
However, the first few months were very difficult for poor Anthony.
Cystic fibrosis children need a fortified calcium-rich diet to prevent whittling bones.
Anthony’s allergy to dairy is exceptionally severe, which caused me to research vegan options that will help aid in his growth.
Having eczema, which he inherited from me, also didn’t help. Anthony’s skin was bright red, and oatmeal baths were the only way to soothe him.
Over the years, I have found a variety of non-dairy meals for Anthony that he heavily enjoys.
The Outcome of Anthony’s Life-Changing Journey with Cystic Fibrosis
Anthony’s grandmothers, siblings, and family have been a massive part of his life in helping with his cystic fibrosis. Although they do not live with us, they love him very much.
Doing the various cystic fibrosis treatment plans, keeping up with checkups, and following his treatment plans ensures a long life expectancy for Anthony.
Anthony is a joyful child, even with the ups and downs of living with CF. He likes riding his bike and playing sports, which keeps him engaged. Anthony is an exceptional reader and takes pleasure in reading, creating designs, making music, drawing, and entertaining us with his amusing jokes.
Anthony is an excellent reader and enjoys reading books, designing things, making music, drawing, and making us laugh with his silly jokes.
His grandmothers are an enormous part of his life, and without their support, I would not know how to cope the way I do.
After his remarkable journey with cystic fibrosis, Anthony has overcome many odds, winning the hearts of anyone he meets with his smiling eyes and kind heart.
Life with cystic fibrosis can be challenging at times, but our secret is always looking for ways to make life easier and more enjoyable together.
If there is one thing Anthony and I have learned on this journey, it is that we can defeat the CF life together by doing our best every day. We take life one day at a time, always uplifting one another through difficult days.
You can tap the icons above and below and contact me through my Facebook, Twitter, LinkedIn, or Pinterest. I’ll happily hear about your CF stories and provide tips!
Marlenny Linda is more than just a writer; she's a passionate bilingual advocate for families with children with medical conditions. With a background in teaching English (TESOL/TEFL) and a Bachelor of Science in Liberal Arts, she crafts engaging, SEO-optimized content that informs, inspires, and connects with these families.
Her specialty is long-form content, where she dives deep into the topics that matter most, from navigating educational resources to fostering a fulfilling life for your child. Marlenny's innovative approach keeps audiences engaged and coming back for more.
