The Diagnosis — Grit To Grace

The number one question I get is, ”How did you know Jadyn has Crohn’s Disease at such a young age?” So let’s start at the beginning because that’s essentially when it started.

My pregnancy was perfect. I was a young, healthy woman and neither Jon nor I had any family history of Crohn’s Disease or any disease for that matter. On July 9, 2014 we welcomed our beautiful 6lb 14oz baby girl into the world.

The first red flag happened around 6 weeks when I noticed some blood in her stool (poop). Listen, if we are going to talk about Crohn’s Disease then we need to get comfortable with one another. Crohn’s Disease falls under the umbrella of Inflammatory Bowel Disease (IBD) so we will be talking about bodily functions.

I immediately called her pediatrician and he didn’t seem too concerned. Apparently seeing a little blood in baby’s poop is not that uncommon.

He said it was probably 1 of 3 things:

1. It’s actually me bleeding when she breastfeeds. I thought this was probably the case because breastfeeding was so painful at first. Sure, I read the books about Breastfeeding 101 but honestly didn’t know what the heck I was doing. I had war wounds from bad latches and dreaded the next feed because I knew it would hurt.

2. She might have a fissure from pooping so much. Don’t say I didn’t warn you about the poop talk. Again I thought, “Yep, that’s it.” Breastfed infants tend to poop a lot. So do people battling a Crohn’s flare up.

3. She has a milk protein intolerance. I wasn’t eating much dairy at the time but I couldn’t say that I was completely dairy free so I thought this was also a valid possibility. A couple of my friend’s kids had an allergy to dairy so I thought this was the current trend.

So I hung up the phone feeling relief that it wasn’t something serious and would eventually clear up. To this day a part of me wants to call up that doctor and say, “Yo, we need to add a fourth option to your list there buddy.”

But who would have guessed?

So the bloody stools continued as we moved from Athens, Georgia to Buffalo, NY. Jadyn was now around 7 months old and her new pediatrician seemed concerned with her lack of weight gain plus persistent bloody stools. We decided to switch her to a hypoallergenic formula. I was good with this because I was exhausted and afraid that something I was eating was causing her to suffer. Well, once we switched to formula things went downhill fast. She HATED formula and basically quit eating all together because she was in so much pain. We went back to the pediatrician a couple weeks later and as soon as she saw Jadyn had lost more weight she immediately sent us to the hospital. We couldn’t even go home to pack a bag. I remember driving down the interstate calling Jon over and over. I couldn’t get a hold of him at work. So I called my mother in law practically hyper ventilating. I remember her remaining so calm but her voice kept cracking from fighting back tears. She told me to focus on getting to the hospital safely and she would keep calling Jon. Finally we got a hold of him and he wasn’t far behind us.

The initial diagnosis was failure to thrive. Essentially it’s what it sounds like, not thriving. Not growing. Not doing well at all. She was lethargic and in bad shape. I plan to expand on these hospital days more in the future but gosh they were some of the hardest days of my life. Watching her suffer and being unable to fix it was awful. Holding her down while someone poked and prodded her over and over went against every fiber in my motherly being. I remember wanting to run every time they came in the room to draw more blood. I didn’t because she needed me. I don’t care how old you are, sometimes you just need your mom, so my mom and MIL flew up to help. Test results showed that Jadyn had lesions and severe inflammation throughout her GI tract, but there was hesitation to diagnose her with Crohn’s Disease because she was so young. We are talking approximately 0.1% of pediatric Crohn’s patients are diagnosed under 1 year old.

My sister and bother in law happened to live in Boston at the time and convinced us to come and get a second opinion from Boston Children’s Hospital. This is by far the best decision we have made as far as her health care is concerned. After some further testing they diagnosed her with Crohn’s. Once we had a diagnosis we started treatments to help her get well. God knew that we needed BCH in our corner because they have stood in the fight with us. Also, we have the greatest family and community backing us. Countless prayers and well wishes have not been wasted on our girl. She is currently 5 years old and slaying this beast one day at a time. Her life looks a little unordinary with tube feedings, treatments, therapies and appointments, but this grit is all she’s ever known. I am praying for her to grow in Grace as she navigates through life. I am proud of her and thankful to be her Momma.