In this interview, Jessica describes what it was like finding out her son was in limbo CF status. Crew is her son, and wasn’t diagnosed until a few months after his birth. In fact Crew is very much like me. We both have passed the “golden rule” test in the CF community and that is the sweat test. He was diagnosed with CF after a genetic blood test. His mutations put him in a CF limbo status. Both of Crew’s mutations were not the well known mutations that many of us CFers have. So the doctors were saying Crew has CRMS. CRMS is basically having a borderline sweat test with one or more CF gene mutations. The individual may or may not show signs/symptoms of CF. Isn’t that a lovely definition especially to give parents who are so concerned. For more information on CRMS click here.
Here is Jessica telling her story about her son Crew!
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Where do I even start?? Crew story is a little different then the most...so bare with me.Crew was born a healthy boy and was doing great until our 3 month check up, I had noticed hewasn't looking any bigger but thought I was just being overly worried. But after we weighed himthe doctor cam in and said “Your son hasn't gained any weight and something isn’t right. Please go straight to Children's ” I immediately wanted to bust out in tears, I got to my car and cried.What was wrong with him, why my child. I picked up my husband, Joe, and we went straight to the hospital. Children's admitted us and ran a million test and everything was coming back completely normal. They discharged us with FAILURE TO THRIVE(which basically means we don't know why your child isn't gaining weight) but there was one more test, the sweat test and we took him to get the sweat test and left. The hospital would call us in about 2 hours with the results. The nurse called and said “the test was inconclusive, there probably wasn't enough sweat collected, just go to your follow up” and thats what we did, after weeks of follow ups and probably gallons of blood later, they decided to do a genetics test for Cystic Fibrosis. I waited & waited for a phone call and when they finally did, it changed our lives forever! I will never forget that day the nurse called, sitting with my sister in law, and the nurse said “well we have some odd news for you, your son has 2 mutations on the CFTR gene but don't know what will happen, you are in medical limbo. please come to the pulmonary clinic next week.” I was TERRIFIED..what in the world did this mean. I think I cried for a week straight, So we went to the doctor and they diagnosed him with CRMS. This meant that one of his genes could or could not cause CF no one knows what will happen. So we went to our appointments and never felt satisfied, my husband and I felt like they had missed something, so we got a 2nd opinion at a different clinic, 4 hours away and SO thankful we did, And they did a CT scan and other tests & he is now on full treatment for CF and doing MUCH MUCH better.
Life before diagnosis was a lot less worrisome, as a parent i worry about all my kids but Crew I worry about a lot. Why is he coughing, is he gaining weight? But now we’re “getting in the grove” and CF is becoming a part of our lives. Just another thing we have to do, like getting dressed we just have too. No choice, just have to.
Before your child was diagnosed with cystic fibrosis, have you ever heard of cystic fibrosis?
Nope, Never...sad but true. CF needs more awareness, I hope one day its like the Pink ribbon everyone knows what the pink ribbon stands for Breast cancer. One day everyone will know what the purple ribbon is.
How did you cope with the diagnosis?
Well I still consider Crew newly diagnosed, even though its been almost a year. There is so much to learn. So coping we have our bad days and good. My husband I think is better at coping with it, he is so optimistic and thinks positive about everything! Im more like an open book, at first all I wanted to do was google, google EVERYTHING..and let me tell you, please don't google. It does NO good. I wanted to fix it and I can’t fix it. No matter how much money I raise or how many treatments I give him, I can’t fix CF. I can try to be the best mother to him that really helps me cope now, knowing I’m doing my best and that he will be okay & have a normal life, just like the other kids.
If we can go back to that day you found out your child had cystic fibrosis, what would you have liked to be told by a doctor? Where did you go to find more information about cystic fibrosis?
I wish the doctor would have told me more about the CRMS that Crew was first diagnosed with. There was hardly any information about it, even online. It was all the same like “your child could get CF or couldn't” but no one told me statics or how or why it happened...It left me in a state of trying to find out on my own & caused a lot of useless frustration. If i would have known a simple CT scan could have told us I would have pushed that a long time ago. His CT scan showed valves in his lungs where the openings are suppose to smaller but on a Cystic Fibrosis patient they are larger and Crew’s were larger. Also, I REALLY wish the doctor talked to my husband and I in English and by that I mean not is medical speaking over our head talk! Just explain it in day to day talk. I remember getting out of the doctors office once with Crew and immediately writing you, John, to ask a question and at that moment I realized that there was some lack of commutation. I got more info about CF from the Cystic Fibrosis Foundation but I also joined different social media groups and I downloaded and app that helped also. But to be honest the most information was from PEOPLE, people who have CF and/or a parent of a CFer! When you first get the diagnosis I think the biggest thing you are really needing or looking for is support!
Were there things you wished you heard on that to either reassure you about your child and his diagnosis that were not said?
Well I wished I would have heard of all the NEW drugs and all the new accomplishment the CFF is making! Im stunned when I read about it online! Not TOO long ago, CF patients didn't live to be out of Elementary school, now the life expectancy is late 30s and BEYOND! The number keeps going up and up and up... Another helpful thing would have been care packet, at our new clinic they actually did give us one with TONS of info. It might should be minatory, if you ask me:)! For the record, I HATE THE WORDS LIFE EXPECTANCY, no one knows what their own life expectancy is.
What has been the biggest challenge for you dealing with cystic fibrosis?
The unknown. It’s hard for us to not know everything thats going on. like for example his Pancreas enzyme levels are always low like 290 but thats still normal(anything >200 is
abnormal) but a person without CF have levels of 500+...so why is Crews so low? Its frustrating,but in the same breathe im so thankful its normal. I could give you plenty of explains or unknown. Why do some people need constantly stay sick and others go there whole life without a hospital stay. We just keep doing treatments and medications to keep him as healthy as he can be.
Please share with us any triumphs you or your child has accomplished because of cystic fibrosis?
Well its the little victories that mean the most to me. Like Crew being able to sit still with a mask on his face and shaking for 30 minutes 2X a day and more without crying or making a fuss. If you have children you can imagine how impossible it is for them to sit still, but he does. He amazes me every time. I can even do dishes or clean the kitchen and he will sit there quietly, but I do have to give some credit to The Wiggles. :) Our pediatrician even mentioned today about how good he is even though he is sick Crew will let him listen to his lungs and look in the ears and do an xray without a struggle...I couldn’t be more proud. As for me I am in the middle of trying to accomplish a Big event in our town for a Cystic Fibrosis fundraiser. I want people to know about Cystic Fibrosis and awareness brings money and money helps find a CURE! I am very passionate, not just for Crew but for everyone with CF. These people are some of the strongest, helpful people I have ever met. They deserve a cure!
Can you describe what it is like being a parent to a CFer?
Being a parent is the most wonderful, hardest, funest job in the world, we have three children Crew being the youngest & only boy (yes, he is spoiled rotten;). But being a parent to a CFer is a bit different, you wonder how long you can hold that child for, that is too many unknowns for us with Crew and that’s what so scary. We go to countless doctor’s appointments and we wait for cultures to come back constantly and we never had that with our other children. If one of the girls were sick, we could wait and try something over the counter without even thinking but Crew keeps us on our feet. Our children have taught us more in life then we ever could teach them. And I mean that. Crew is so resilient, he can handle way more then I ever thought a little 24lb person could!
What has CF taught you?
CF has taught me to be thankful, thankful for everything. As humans we take a lot for granted, our healthy lungs, being able to go places without a worry we might get sick, or a possible hospital stay. Its taught us to be more responsible as parents and not as care free, we can’t skip any medication or treatment because it’s late or we are tired, there is no excuse. Crew solely relies on us!
How will you approach the subject of cystic fibrosis to him/her?
We haven't gotten to this point with him yet, he is only 17 months old. But his older sister is very curious about Cystic Fibrosis, why he has to do these things and she doesn’t. We have tried to explain to her that Crew’s body works a little differently then most kids, and his body needs a little more help to work right. I plan on buying some children’s books about CF to read to them and one day read to Crew. I also hope and pray that he embraces Cystic Fibrosis and never feels ashamed by it. I want Crew to know that CYSTIC FIBROSIS DOES NOT DEFINE HIM! It’s just a part of him.
I talk with a lot of newly diagnosed parents to CFers. I want to know what you would tell a newly diagnosed parent to a CFer.
I would tell them that your child will be perfect and OKAY!! He/she will get sick, just like every other kid in the world. Please don’t keep them in a bubble, I tried to in the beginning...i got a bag vacuum cleaner, soy candles, no mud, but wow, how can you keep up with it all. We CANT KEEP THEM FROM GETTING SICK! Bacteria is everywhere, probably on the keyboard I'm typing on. Just enjoy your child give them extra loving, you know what’s right for your child.
Mothers have an instinct in us, seriously. Also, be up front with the doctors, always. If you don't feel comfortable with your current doctor talk with others. See what the best fit is for your family. There HAS to be open commutation!!
I also want to add that Crew can still PASS a sweat test, and that he has 2 rare mutations and Alabama newborn screen test only test for 32 most common so that’s why he also passed the NBS test! SO NEVER GIVE UP! If you feel like something isn’t right, do something about it!
What do you have to lose? Even if you were crazy and everything was normal, well then you would be 200% sure, right?? I knew something was going on with Crew and I wasn’t going to stop until I got answers!
Crew is an AMAZING boy who will grow up to do great things and be loved and live a happy, long normal life!
Well I can tell you that the Pettus family has come a long way already in this short year and a half. I recall reading Jessica's forum post on a CF social media site about Crew passing his sweat test but the doctor's believing he had CF. I am so thankful that I reached out to this family to show them that Crew can live a normal life with CF. I am just glad that the Pettus family didn't have to wait 12 years like my family did to find out I have CF. The lovely gold standard sweat test really needs to be reevaluated to see if we should be relying on this test even after the new born screening suspects CF. If one person falls through the cracks it's not worth to use the sweat test. If any doctor believes a child could have CF do the sweat test and the genetic test. I know it's about the cost but we are talking about people's lives. Ok I will get off my soap box.
Jessica provides some great advice for newly diagnosed parents as she understands you cannot prevent your child from all bacteria. No parent and no matter how often you clean it's virtually impossible to prevent everything. You have to see that your child is "normal" even though they have CF. I can see that where Jessica states "Cystic Fibrosis doesn't define him". That is how I view my life with CF and how I hope many in the CF community view their life.
I couldn't agree more with Jessica about hating the phrase "life expectancy" I see way to many people get caught up on the life expectancy of a CFer. In all reality not a single person with CF or not has a clue on how long they will live. You have to live in the moment and squeeze as much good out of every day. No one ever will get a single day back in life.
This is a great interview from a newly diagnosed parent's perspective. I hope you find something in it that you connect with.
I am proud to call Jessica and the Pettus family a true friend!! Thank you for participating in the interview series!
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