Having a Newborn With CF During COVID-19

The recent birth of my son brought me news that I never expected -- a diagnosis of cystic fibrosis.

| 7 min read
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Jake Ward
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In general, I've never liked surprises.

Whether it is a birthday party; our 3-year-old telling us she caught something, “So cute,” like a mouse or snake; or my wife jumping out from around the corner; I don't like surprises. I prefer to plan for things and -- at least -- pretend to get ready. I guess I just like to be “in the know” and have a little control.

Our son, J.J., aka John “Solo” -- born May the 4th -- has been full of surprises. After a C-section, J.J. had low blood sugar and needed to be monitored by the neonatal intensive care unit (NICU) at our hospital. Surprise! We had just gone back to my wife's room for some medication when we got our next surprise -- a phone call asking us to come back down to the NICU. When we got there, the attending physician informed us that J.J. had some bowel distension and needed to be helicoptered to a different hospital about an hour away. Due to the weather, this actually became an ambulance ride. Surprise! Thanks to COVID-19 visitor precautions, only one of us could go with him. I left my wife and followed the ambulance.

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When I walked in, somewhere between 15 and 20 medical professionals were in Bay 1 attending to our newborn. We didn't know why at the time, but his small intestine had twisted up in utero and necrotized without being detected. Air started filling it and that's what alerted the nurses to his condition. A surgery was imminent, so my wife checked herself out of the hospital and got a ride to the new location armed with a few bottles of heavy painkillers. They were able to stabilize him and decided to do the surgery the next morning. We slept as much as we could and waited for the 7 a.m. surgery. J.J. got back around noon, and everything was successful; they reattached the small intestine after removing 80 cm (about 31 inches).

Our next surprise came from the lead surgeon, who reviewed how the procedure went. I remember exactly how he said it, “We cleaned out all of the sticky meconium, and we aren't sure, but this is consistent with cystic fibrosis.” The attending doctor disagreed, and he shrugged and said he could be wrong, but we'll see. We shrugged it off as well, and our attending told us to wait for the lab results. J.J. spent the next few days getting all of his nutrition through a PICC line. The hospital was great and kept us in the know every day.

The next surprise was when the extra visitor exception they made for us expired, which meant when we left for the night, only one of us could return the next day. They kept suction attached to J.J.'s stomach to prevent any swelling in the intestines while he healed, and our next goal was for him to have the first stool of his life. We heard plenty of bowel sounds, but nothing solid came out. We waited … and waited … and waited. On May 11, J.J. vomited all over dad -- green ooze. It had clogged the suction tube and had been building up in his stomach. I could tell by the nurse's reaction that it wasn't good. I heard a new voice in the hallway shortly after and knew the results of his genetic test were in. I sent a text to my mom and waited. At least, this surprise was foreshadowed. We got the official diagnosis of cystic fibrosis, the secret of the ooze. The pulmonologist was very nice and helpful, but I still felt sick. It didn't help that I was still covered in green ooze.

My mom volunteered to watch our toddler that night so I could tell my wife the news and we could process the information -- and process we did. We processed an entire bag of peanut butter cups and a few boxes of Kleenex.

No one in our family had ever been diagnosed with CF for as far back as we could track. We hadn't done any genetic testing -- our oldest didn't have any symptoms -- and we were shocked to hear many people share that same feeling and experience: surprise, terror, grief, and fear.

We shared the news of J.J. having CF with our friends and family and then got our next surprise. An outpouring of love from places we didn't know existed -- meals, gift cards, messages, letters, videos, books, gas, groceries, babysitters, an apartment near the hospital -- and more support than I can describe. We got connected to people from our past and people we have never met, and our family took care of us -- no questions asked. This went on for the next 42 days while J.J. recovered in the hospital, and mom and dad had to rotate days.

Jake-Ward-Family-Rectangle

Although the world endured closures for COVID-19, we found them to be a blessing. I got to work from home, the hospital, or wherever I could. Everyone had to wash their hands constantly, and we had a great excuse to keep people from visiting! After a few setbacks that included a blood transfusion, a few days of starvation, and antibiotics, J.J. ended up getting a Broviac line put in his chest for nutrition. This was our best shot at coming home, but it meant we would be bringing him home with a pump for 18 hours per day, another surprise. After 50 days in the hospital, the final week with a great view of the college football stadium (Go Hawks!), we got to come home.

J.J. is doing well, all things considered. Big sister can tell people her brother has “65 roses.” We're getting involved, raising awareness, and want to share our story. We know we aren't unique. We know people are living and thriving and the cystic fibrosis community is wonderful. One of the most helpful things we were told is, “More than anything, this diagnosis is love,” and boy, were they right.

My problem with surprises is that I have no control over the situation. And I'm learning that is OK. Surprises make good stories, provide unique situations, and give you a chance to live life a little differently than you planned.

I'd even argue that surprises give you an opportunity to learn and grow if you can go with the flow and give up some of your control. I still don't like surprises, but I do think they make life exciting and are good for me. They say if you want to hear God laugh, tell him your plan. I'm betting He'll surprise you. We're looking forward to a lifetime of surprises with J.J. and our family.

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

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Topics
Coronavirus (COVID-19) | Diagnosis
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Jake's son, John or “J.J.”, was diagnosed with cystic fibrosis shortly after his birth. Jake, a graduate of the University of Northern Iowa, works full time in senior living and sells residential real estate. A former rugby player, he can still do the splits when properly motivated. His family fundraises for Great Strides and participates in the Iowa 65 Roses challenge. Jake lives in Davenport, Iowa, with J.J., his wife, Tara, and daughter, Ella. You can reach Jake by email at jake.ward.exp@gmail.com and Facebook.

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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.