The real way I found out my son had cystic fibrosis


I wanted to share the real way I found out my son had cystic fibrosis.

In the scheme of things, it’s a blip. It was an infraction perpetrated by a young and inexperienced worker. Or was it an infraction made by a person lacking compassion and common sense? I don’t know. In that moment the positive diagnosis changed my whole world, and the way it went down made me angry. I didn’t want to rant for the sake of ranting at the time, about two weeks after Eli was born. I was out of my mind, grappling with a diagnosis that terrified me. Thinking back, though, it’s tied to a few things I learned about taking care of business at a hospital. That’s why I share now, all these months later.

We change for the better by facing mistakes. Not just for serious stuff. My workplace hosted its first work-day gathering today in a long time. I’m on the party planning committee. So we threw the BBQ, and we all had some fun. Afterwards, my committee members had a party post mortem. We were like, this went well, that could have been better, but, oh, we lacked a theme. Next time: LUAU! How much rum can we inject into baked goods and can we order matching shirts?

OK Listen: I found out my son had CF by overhearing a loud talker from the lab on the phone with a nurse at Children’s OU Medical Center in OKC. OK, OK. Maybe he wasn’t a loud talker. Maybe the volume on the phone was set too high. I’m not picking on Children’s. It just happened to be where we were when I found out Eli had CF. It is the only Children’s hospital in Oklahoma, and that’s where Eli received life-saving surgery on his gut, which was blocked at birth by meconium, a baby’s first poo. Eli’s poo was made thick and sticky because of cystic fibrosis, which makes cell function wonky and the body’s mucus sticky and troublesome. His swollen gut could have perforated, infected and killed him had we not had a surgery at Children’s that unclogged his plumbing and gave him the ability to poo like normal — wapow.

I did not yet know for sure that the deadly genetic disease had caused his issue back in mid- December 2012. My tiny son was strung with tubes, hooked to machines and fluid bags and had a scar across his belly. At either end of the scar poked bright red circles the size of cherry Lifesavers. Those were the ends of his intestines. One red hole oozed poo into an baby-sized ostemy bag affixed to his tum. Vaseline and gauze covered the other hole. Where was Mark? For whatever reason, I sent Mark away. I had a bad habit of doing this at inopportune times while we were in the NICU. I sent him home for a break about 10 minutes before I found out Eli needed gut surgery to save his life. Then, I dissolved ala wicked witch into a pile of snot and tears on the floor.

Of course, I sent Mark away again as I sat in that room. Of course, moments later test results came back for the deadly disease we feared so much. It was just me, Eli, another baby roommate clinging to life in the bed over, and the nurse.

It’s hard to describe how much the potential diagnosis had scared us moments before it became our reality. I had to sit down when anyone called the disease out by name. It was my He Who Must Not Be Named. Each time I heard it discussed in those early days, I began to pass out. I could feel the blood drain from my face. My head started to swim. I couldn’t breathe. I was weak from giving birth, mentally fragile and traumatized by the fact that my son had needed surgery for reasons I couldn’t fully comprehend. I was not in control of my body when He Who Must Not Be Named came around.

The phone in our NICU room rang. That’s when I found out my son had cystic fibrosis because I overheard the conversation between the nurse and a lab worker.

The chloride level measured in a diagnostic test were sky high, indicating cystic fibrosis. I think eight times what’s normal for an infant.

The lab worker was loud enthusiastic about the outrageous test results. His voice just bounced.

Anyway, the nurse took the call from the lab. It was a wireless phone, I think, but my memory is fuzzy.

The volume was so high I could hear every word. “Yeah, he’s got CF,” I overheard.

She should have taken the call in the hallway.

My God, I thought later. Why couldn’t she have figured that out? Take it in the hallway and call the doctor in to deliver the news that a baby has been born with a disease that will kill him, as medicine stands now, any way.

After I overheard the conversation I demanded the nurse confirm it.

“He has CF, doesn’t he?” I asked.

“Yes,” she said, handing me a box of tissues.

Then she disappeared. If we exchanged other words, I don’t remember. I just sat there, stunned and sobbing. Mark and I had clung to the hope that he Eli must be a rare case. He was the rare case of a baby with a blocked bowel who did not have CF. That does happen. Surely, this was what was happening to our baby. A blocked bowel? That was just a fluke. A surgery to fix it, and done.

Next, a hospital volunteer walked into the room, brimming with Christmas cheer. She wanted to take a photo of Eli we could use in a scrapbook craft session for NICU moms.

My tears exploded all over this poor woman. She hugged me.

“They don’t understand,” she said. “Sometimes they don’t understand that being in the NICU alone is traumatizing.”

I had to agree. What was wrong with that nurse? What a @#$%^&& idiot. Thank God for hospital volunteers!

I had many competent, caring nurses, who I have written about before. Then there were those few who were lacking. Those who didn’t wash their hands after entering my room and reaching out to administer care to my child. I pointed this out to a nurse before her hands reached Eli’s body. “Who was the patient she visited before?” I wondered. “Did that child have some ailment that could hurt my son?” There were several nurses who entered the room having no idea Eli had CF. I had to point that out to them. Do workers not read charts before visiting a next patient?

Anyhow, I asked the cheery hospital volunteer if she could please, somehow, ask the doctor to come right away. I didn’t understand the news that had just been delivered. I didn’t understand it. I was scared.

I thought that the nurse left to get the doctor, but I didn’t really know, I told the hospital volunteer. I couldn’t believe I’d just been left to sit there with this news.

The volunteer rushed off. The doctor came to visit me.

Here is a link to the recording of the encounter between myself and the doctor.

The doctor — and I apologize because I noted her name and need to look it up — well, she was compassionate, not cold and clinical.

Dr. Eli
Dr. Eli

I’m not angry at that nurse, or the way I found out about Eli’s diagnosis anymore. The past is the past – why dwell? I have a beautiful boy to care for, a sweet girl, a quirky husband with unruly hair, and my family is happy. Moody, but generally functional!

Those tumultuous first months were hard, but we are stronger now. Yes, I’d prefer a life without deadly genetic disease to one with it, but hey, this is the hand we’ve been dealt. We’re going to play the best game we can. We will be the fiercest of competitors!

Medical professionals need to exercise sensitivity when dealing with families going through ordeals, like we were back then. It may be old hat to you, just another day at the office, but it’s new and scary to people like us.

I also want to encourage family members to ask good questions and follow gut instincts. To not be afraid. If you think something is off with a nurse or a doctor, demand a change. Start yelling if you have to. Don’t apologize. Life is at stake. Tell a charge nurse about your issues and switch nurses. Switch hospitals if you have to. Be vigilant. Hospital mistakes can kill your loved one.

You don’t need a fancy degree to sort those nurses and doctors who possess common sense and people skills from those who don’t.

Knowing what I know today, I would have taken the nurse’s handling of that call as a sign of inexperience or lack of compassion. Those are both good reasons to complain and ask for better.

A hospital can’t fix its problems if it doesn’t know about them. Demand better. They are working for us, as it turns out.

Yes, they are working for us. Don’t you forget it.

Thanks for reading.

Did you dislike the way you found out a child/loved one had CF/chronic disease/cancer/etc.? Did you have an experience that was as sensitive and ‘good’ of an experience as possible, given the nature of the news? What tips would you give to the person who delivered the news? How has your attitude changed since the diagnosis? Feel free to share your experiences below!


4 thoughts on “The real way I found out my son had cystic fibrosis”

  1. The day after Max was born he had surgery for meconium ileus. The surgeon met with us in the NICU to explain what was done and finished with “in 99% of cases this is caused by cystic fibrosis” and walked out of the room. My husband sorta passed out and my MIL, a retired nursing instructor chased after him and told him to find someone who could explain CF to us. Genetic blood tests came back 4 days later with CF, surprisingly he passed his sweat test with a normal 32.


  2. Do you have a history of CF in your family? Is that how you knew that he might have it after he was born with meconium ileus? I was born with meconium ileus and had to have emergency surgery at 2 weeks as well but my parents didn’t find out I had CF until I got pneumonia at 5 months and couldn’t get over it. They had never even heard of it, we have no family history of it. I am the youngest of 4 and we know now that my sister is a carrier but we don’t know if my 2 brothers are.


  3. Reading this post, my heart was breaking for you. I think every parent of a child with a chronic condition remembers the exact moment their child was diagnosed.

    For me, it was a text message from my midwife when my daughter was 10 days old. “There’s been an issue with her newborn screening. Please call me as soon as possible.” WHO SENDS SOMETHING LIKE THAT BY TEXT. In addition, she didn’t pick up her phone afterwards. She didn’t call me back for 45 minutes. When she did call, she explained that N had Cystic Fibrosis but couldn’t give me more information because she didn’t know enough about it.

    Luckily, the nurses at the Children’s hospital answered their phone once I got their contact information. They were wonderful.


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