I still haven’t gotten a chance to write Mouse’s birth story, because every time I would try to sit down and put that beautiful day into words I was reminded of this big dark cloud that has been hanging over our heads.
When Mouse was a week old, we received a call from his pediatrician telling us that he’d had an abnormal test result from his newborn screening.
In all 50 states, hospitals are required to collect blood samples from a heel stick shortly after a baby is born. This blood is then tested for a whole host of disorders like PKU, hypothyroidism and MCADD, only to name a few.
Our son’s test had been flagged for high IRT levels – meaning he could have cystic fibrosis, a deadly inherited chronic disorder that could destroy his lungs and leave him unable to process nutrients.
Our second reaction to this news (our first being immediate and fervent prayer) was to learn everything we could about the disease. We’re information junkies, but this wasn’t knowledge we really wanted to have.
Nevertheless, while we waited a week for an appointment to have true diagnostic test done (and another week for those test results) we read all we could find about CF.
Early symptoms of the disease include failure to thrive, coughing and wheezing, stool issues and salty-tasting sweat. So we weighed our baby every few days before his morning feeding. We trembled at each sneeze and cough, inspected every diaper. And yes, we licked the baby. A lot.
And while his sneezes seemed normal, his poop perfectly formed and his weight gain impressive (27 ounces in two weeks), we worried that maybe he did taste a little bit salty.
When it came time to have his chloride sweat test performed, we made the nerve-wracking trek to the children’s hospital. There, the technician strapped electrodes to our baby’s arm and applied an electric current to stimulate his sweat glands, then wrapped a spot on each arm with gauze and plastic. I had to hold him still for this, shushing him through his grunts and cries of protest.
That in itself was a supremely shitty experience, but it had to be done so I put on my calm mom face and did it as my husband sat close by, white as a ghost and looking like he’d like to vomit. Later, as the days ticked by so slowly while we waited for test results, we took turns consoling each other.
That’s one of my favorite things about our marriage – the unspoken agreement that we are forbidden from collectively losing our shit in times of crisis. We have to take turns. Somebody has to be the badass at all times.
We were, thankfully, one of the lucky ones this time. Our son tested negative for cystic fibrosis. But I know too much now, and I can’t just go back to being oblivious to this disease.
While it once proved fatal for children early on, cystic fibrosis is now much more manageable. The average life span for a person with CF reaches into the late 30s. There is no cure, but science is working on it, folks, and with our help I believe that in my son’s lifetime there will be.
Cystic fibrosis is a sneaky little recessive disorder. More than 10 million Americans are symptomless carriers of the defective gene. It’s not something that can be predicted by family history – and it will strike one in every 3,500 live births in America.
Next month is Cystic Fibrosis Awareness Month and I’d like to begin now doing my part to help fight this disease. I encourage you to read more here, and if you feel called, to join me in donating here.
The Cystic Fibrosis Foundation is in the business of adding tomorrows, and I hope you will join me in helping them.
Mamamash 
He’s not even my baby and I’ve been so scared this last week. (I also may have googled it and read up on it). Such a huge relief for you…. but yeah, it’s scary to think that there are so many newborns affected by it.
(love the tag)
Thank you for being my confidant and babysitter. 🙂 I suck so hard at weak moments and I appreciate the way you handle me.
I prayed like crazy and so did several of my friends. I’m so glad our mouse is healthy. It is very scary not knowing. But that is one healthy,strong,adorable,prayed up little baby. He was being prayed for before he was even born. Even though I haven’t gotten to meet him in person yet I sure do love him. And the monkey too. I knew a little about cf but read a lot when you called me. So now we are all cf experts. But thankfully it was just extra info. We don’t have to worry anymore. (I can’t believe you licked the baby)
We appreciate you and your band of prayer warriors. 🙂 I am very excited for you to meet him and laugh at his little squeaks. I think sometimes God brings us to these places so that we can be made aware of others with a need and feel called to serve them.
And yeah, you bet we licked him. You would have too!
Well, I don’t want to toot my own horn but I consider myself an extreme expert on CF. Why, you ask? Because both my boys battle it. I cried reading this because I remember when we had Gia and we had to go through the same testing even though we had her cord blood tested and it was negative. I cried again because it brought back memories of when I found out about Nico and Tommy. My blog isn’t a CF blog but I do write about it from time to time. I am so happy that this turned out to only be a scare and that Little Mouse doesn’t have it. I remember licking Tommy, Belle (Tommy’s twin) and Gia before we found out their results. They all tasted salty to me. 🙂 Little babies sweat a lot. The girls tested negative. The boys are doing well but it takes a lot to keep them healthy.
AnnMarie, I had no idea. I am sorry you are tasked with this struggle and you will from here on out be in my prayers while you work so hard to keep your boys healthy and wait for that cure to come. If there is every anything my family can do for yours please, please let us know.
You are so sweet. Thank you for your prayers. If we ever get back to fundraising (I wrote about what a struggle it was for me to do), I’ll hit you guys up. 😉 Until then, being on this journey of motherhood together will do. 🙂
I’m so sorry for your scare, Julie!
SO glad that Mouse is A-okay.
The positive thing from all this? One more awareness advocate for CF. So proud of you!
(hugs and kisses to the small one, no licks necessary)
These kids. I swear. 🙂
I’m so happy to hear that everything turned out ok. It is a scary disease that’s for sure. My neighbor and friend suffers from a form of CF and had to have a full lung transplant almost 6 years ago. She is doing remarkably well but there are a myriad of issues she has to deal with. The saddest part for her though is losing many friends who have been on the journey with her and have lost their fight against CF.
That’s so sad and frustrating especially when I just got done watching the third erectile dysfunction medication commercial on tv. So much money spent on penises and not nearly enough on keeping friends and family alive.
I’m so glad Mouse is ok. I can’t imagine how scary that must have been.
It’s a good thing I was breastfeeding or I’d have been drunk off my ass this whole time, no lie. 🙂
Oh my.
I can’t even imagine, Julie.
But I simply LOVE you for taking the fear you had and channeling it into future action for others.
Grateful and generous.
That’s the best way to be in this world.
The only thing more gut-wrenching than the thought of losing someone to this disease would be knowing I could have helped and not done so. I feel like this was such a wake up call for me, realizing that I do lived a charmed life and therefore have a responsibility to others because of that.
Thank you.
Thank you for being one of those people who just give of yourself because it’s the right thing to do, not because you have to out of obligation, or because something is effecting your life specifically.
Thank you for advocating and creating awareness.
For using your voice.
I am swooning over here.
SWOONING.
Mouse is most likely a carrier, and I want a cure for this disease before it has a chance to affect my grandchildren. Totally selfish, I assure you. 🙂
We forget, embarrassingly enough. Sometimes, we forget the sheer amount of shit that can happen in the world and we need reminders. I’m not glad you had this scare, but I’m glad it made you want to find out more, do something, educate. Thank you. (And yes, I’d have totally been licking and trying not to eat him because OMG YUMMY BABY.)
I think we forget as a survival mechanism. If we gave a moment of silence for every awful thing that happened in this world, we’d never get off the couch. But some things call for help more clearly than others, and when they do, you have to listen.
I immediately went to my Lord and then to all of my prayer warriors, and they went to theirs. How wonderful to have these Godly people to rely on in times of need! We all shared in the joy of the wonderful news. I should have remembered that he always failed his first tests while you were pregnant, the little mouse! I will join you in the fight against cf, financially. It is startling how many people this disease touches.
He’s a little stinker, likes to scare Mama. 🙂 Second kids, they tend to do that, hm? Thanks for your donation!
So glad that your son is okay, and does not have CF! You’re continued advocacy for Cystic Fibrosis and newborn screening is commendable. If you are ever interested, would love for you to share your story on our blog, or do a guest post. It’s great to find people who continue to advocate for these rare diseases and newborn screening after a false positive experience.