Navigating CF as Adoptive Parents

Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.

| 5 min read
Jessica Dean smiling and holding her son, Patrick
Jessica Dean
Jessica's son, Patrick, holding and biting a piece of therapy equipment in the hospital

On July 1, 2022, we became a family of five. Little did we know that our sweet boy would bring many surprises with him. 

In the spring of 2022, my husband and I got the stunning news that a birth mother chose us to be the parents to a sweet little boy in Texas. We were thrilled! Our two daughters, who we adopted as well, were over the moon excited about a baby brother.

Patrick came into this world at 37 weeks gestation. My husband, Philip, and I felt blessed to be at the hospital for his arrival. After Patrick was born, he was transported to the NICU where he would stay for the next two weeks. During his stay, he would work on bottle feeding and had issues gaining weight. Little did we know the news that was yet to come. 

When Patrick was discharged, we stayed with family in Texas until the adoption paperwork was complete. That’s when I received the call — I will never forget hearing that his newborn screen had an abnormal (positive) result for cystic fibrosis. My heart sank when I heard those words, and my mind was going in a million different directions. But his NICU stay all made sense — the weight loss and 10 oily poops each day.

It is amazing how your brain works after hearing such devastating news. I spent days grieving my baby who is still alive. It is a special recipe of standing still while coming face-to-face with your worst fears and waiting in a state of uncertainty to see how things work out. I would look at his little face, and he would look at mine. That is what gave me the courage to fight and do all that I can for him and his health.

Once we returned home, we got into the routine of changing lots of oily poops, sterilizing bottles, giving a newborn enzymes, and establishing new routines with our three children. It did not take us long to notice that Patrick was not the best eater. He had monthly CF appointments, and his weight would not increase as his care team wanted it to. We tried everything: charting all his feeds, changing formula, fortifying his formula, and testing different gastrointestinal (GI) studies. Everything always came back normal. Patrick just never seemed to have a big appetite. He was hospitalized a few times for dehydration and weight loss.

After many discussions with his CF team, we decided to go forward with a Gastrostomy Tube  (G-tube). He received his G-tube right after his first birthday. My heart was broken after making this decision. Many questions and mom guilt consumed me. Did I do enough for him? Is this the right decision for him? Looking at Patrick, one would not notice that he has a chronic illness. Now, with a G-tube, it is a constant reminder of his cystic fibrosis. As a mom, you want to protect you children from the stares, the questions, and the pity.

After Patrick got his G-tube, it took a few months to get used to everything. I was a bit overwhelmed with this new hole in his body. Learning a new way of giving him all of his nutrients was also a challenge — I promise if I can do it, anyone can!
 

In the end, it was the absolute best decision made for him. We no longer stress and worry about if he is eating enough, gaining weight, and forcing him to take his medications by mouth. You can also order cute little pads that go around the G-tube.

Patrick has had his G-tube for about three months. He is doing very well with it overall. When he first got home, he had some issues tolerating his feeds — it is definitely trial and error — but now he gets continuous feeds at night via his G-tube and can eat by mouth during the day for extra calories. Patrick is having major issues with eating table food and an overall lack of appetite during the day. His little belly gets so full during the night with his feeds, it makes him not really want to eat during the day. Patrick is going to speech and occupational therapy to help with his eating. I am very comforted knowing that with his continuous feeds, he is getting all of his required calories for growth and to maintain good lung function.

Patrick is our special little boy who we are blessed with for many reasons. We will always be his strongest supporters and advocates. Someday this little boy will change the world.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Caring for a Child With CF
Jessica Dean smiling and holding her son, Patrick

Jessica lives in Memphis, Tennessee with her husband and three beautiful children. After receiving her degree, Jessica worked as a pediatric respiratory therapist for 15 years. Jessica now stays at home to care for her son with CF, Patrick. Jessica feels that her experience as a respiratory therapist has benefited Patrick’s care tremendously. You can reach Jessica via email at jbmann33 at aol dot com.

Recent Community Posts
Coming Full Circle: Becoming a Genomics Scientist with CF
Blog | 10 min read
How CF Influenced My Career
Blog | 6 min read
Managing My Mental Health as a Teen With CF
Blog | 4 min read