‘Calm down a little. Sleep it off.’ My baby had an egg-sized lump on his skull. I was told I was ‘just a stressed out momma.’: Baby diagnosed with Chiari Malformation after mom’s concerns brushed off for months, ‘I’m so glad I trusted my gut’

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“I was in the middle of what I feel was the worst time of my life when I found out I was pregnant on June 15, 2018. I was living in a state with no family, about 8 months out of leaving a very toxic relationship. I was mom of two beautiful boys, working 3 jobs, and in the beginning stages of a very stressful custody battle. I was unprepared to say the least. I was honestly terrified.

Throughout my pregnancy I suffered bad anxiety and depression due to many many years of toxicity and trying to maneuver through so many huge life changes so quickly, for the sake of my two boys having the absolute best life I could provide. At my very lowest point, I had convinced myself that maybe my kids didn’t need me after all, and I was better off dead. It was very hard and I felt as though I was alone even when I wasn’t.

Courtesy of Tiara DeCamp

This being my third pregnancy, you would think it would be smooth sailing. But I quickly learned that could not be further from the truth. In the beginning stages of my pregnancy, I was having blood drawn every week because my levels weren’t where they were supposed to be. I also had very unstable blood sugar and blood pressure that was constantly under examination.

After a while, things finally seemed to be calming down. I found out I was having another perfect little boy and my feelings of depression vanished. I was happy. My boys Mayson (5) and Lochlan (3) were happy and life was just great! Then in came another crashing wave.

November 18, 2018, I found myself in excruciating pain. It was so bad that I couldn’t even speak. I was rushed to the hospital and ended up hospitalized for almost 2 weeks. I was diagnosed with a severe kidney infection that had progressed to the point I was borderline septic and ran a fever around 101-104 for 5 days straight. At this point, I was 26/27 weeks pregnant and was told I was at a ‘great risk of losing the baby’ due to my core temperature staying so high, as well as the stress my body was going through and the baby. I was in and out of the hospital several times over the next 11 weeks due to my kidneys and was being administered frequent non-stress tests due to lack of fetal movement and inadequate heart accelerations.

Courtesy of Tiara DeCamp

On March 12 2019, I went in for a routine check up. I was 38 weeks pregnant at this point, which meant it was time for the last ultrasound before baby was born (scheduled c-section was March 20). During the ultrasound, my doctor suddenly got very quiet and I knew something wasn’t right. She called in a nurse and they both continued to examine the ultrasound. Finally, after what felt like an hour, my doctor finally looked over to me and said, ‘You’re going to head straight to the hospital after this, and call who you need to call because you’re having this baby tonight.’ My amniotic fluid had dropped dangerously low and the baby was in minor distress.

Our beautiful baby boy, Rowen Kade, was born on March 12, 2019 at 7 p.m. exactly via c-section. This was my second c-section, but the first one I was awake for and it was truly one of the coolest experiences of my life. I’ll never forget it. The second they pulled his little head out, he started to cry instantly. Before they showed him to me, they cleaned him, weighed and bundled him as they closed me up. He weighed 7lbs 6oz and had strawberry blonde hair with beautiful dark blue eyes. He was still screaming when they had finished and the second they put him up to my face I said, ‘Hey Rowen. It’s okay. I’m your momma. I love you baby.’ Within seconds of hearing my voice and having his face against mine, he was calm. That exact moment made EVERYTHING I had endured during pregnancy worth it, a million times over.

Courtesy of Tiara DeCamp

A few hours later, they took him to the nursery for his first bath, and they noticed he had a sacral dimple. For those that aren’t familiar with a sacral dimple, it’s a little indentation at the very bottom of the spine/top of the buttocks. Sometimes this can be a sign of underlying spinal issues such as Spina Bifida. So, they ordered an ultrasound for the next morning. The ultrasound was performed on March 13th at which time they ruled out the diagnosis of SB.

On March 15th we got to take Rowen home. At this point Rowen’s weight had dropped to 6lbs 12oz. While a baby losing weight isn’t out of the ordinary, his weight loss continued so quickly the doctor had us come in for frequent weight checks.

Rowen has always been exclusively breastfed. Around 2 months of age, regardless of what I tried, I noticed he wouldn’t eat from my left side. It appeared to be extremely uncomfortable for him to turn his head that direction and I just never really pushed him to do it because I didn’t like to see him in pain or hungry. That being said, from that point on to current day, I’ve been breastfeeding exclusively with only my right side (10 months and counting now), which any momma knows is ROUGH.

Courtesy of Tiara DeCamp

On top of the discomfort Rowen had with turning to his right, he was also spitting up quite a bit, so I decided it was time to take him into the pediatrician. At that time, I was told he had reflux and they gave him medication. We followed the regiment prescribed by the doctor, but it provided no relief. I took him in about two more times for this issue progressing and all that was done was me receiving a higher dosage of the prescription. I decided to just stop giving it to him because, in hindsight, the reason it wasn’t improving was because he was diagnosed with something he did not truly have and I knew it. Unfortunately, misdiagnoses became very common in little Row’s life.

We continued going to the pediatrician almost once a week because Rowen wasn’t improving. His symptoms actually started to progress into things such as grabbing his head constantly while screaming, almost complete inability to turn his head, and constant throwing up. I knew something wasn’t right, but I was told time and time again at this point that I was ‘just a stressed out momma’ as well as things like ‘he’s totally healthy, you should just get some sleep and calm down a little.’ Honestly, the number one thing I was told is that I needed sleep. It got to the point that every time they saw me, they asked if I was getting sleep and telling me how bad I needed it. For a while, I was starting to doubt myself and think maybe postpartum depression was getting to me and I was going crazy. What if my baby was totally fine? I started to feel guilty that I was putting him through constant doctor visits at such a young age for nothing at all. At the same time, deep down, I knew something just wasn’t right. I decided to go with my gut and keep pushing for answers despite being pushed away over and over again.

Courtesy of Tiara DeCamp

At 2 and half months old, Rowen started Physical Therapy, which he attended for about 3 months for the neck pain/stiffness he had been exhibiting since birth. It gave me a slight glimmer of hope. I though maybe he would finally feel better. However, in the end, it didn’t make a bit of difference. Once again, I was back trying to tell the pediatrician it didn’t work but they kept insisting we continue and that it would help over time. Eventually, I was having to pay a little for each unneeded visit out of pocket because even insurance didn’t see a need for them, so I became quite assertive in my quest to make them see there was no progress.

Courtesy of Tiara DeCamp

Rowen began having more uncontrollable bouts of screaming, and severe back arching on top of the other symptoms. The newest and scariest symptom he began exhibiting were extreme swelling in his soft spot on the top of his head. One morning, I took a photo of Rowen’s soft spot swollen to the point it looked like an egg was in it, and sent it to the pediatricians office. They called me right away and sent us to the Emergency Room for some testing. They felt his head, and sent him home. It happened again and again and they sent us to the emergency room each time, but it got us nowhere. His pain kept getting worse as we continued down this path of ‘testing’ which never provided answers.

Finally, at 7 months old, I decided enough was enough. I knew there was something wrong with my baby. I was sick of seeing him in pain and I was especially sick of no one listing to anything I was saying. I decided to take him to a children’s hospital in the big city, which is about 6 hours away from my home. I got a hotel for the night and took him in the next morning. They listened to each concern I had and agreed there was definitely something going on. Right away they sent us for an MRI. Finally, someone believed me!

Courtesy of Tiara DeCamp
Courtesy of Tiara DeCamp

After a few weeks of waiting for results, we got a call to come back to the hospital. On December 3, 2019, WE HAD ANSWERS! We met with the neurological surgeon and right away she said, ‘ It’s a very good thing you pushed so hard for your baby boy. He has something called Chiari Malformation Type 1, but with Type 2 characteristics.’ She explained how rare it was for this to be found at such a young age and that Row is very lucky it was found so soon. She said that usually, although it’s something a person is born with, most people never know until adulthood when they can explain their pain in detail and at that point, it’s much harder to help. On top of this, Rowen has a low-laying conus medullaris (spine) which will more than likely require surgery down the line as it will effect the strength and usage of the lower half of his body.

Courtesy of Tiara DeCamp

A Chiari Malformation occurs when brain tissue extends into the spinal canal. It happens when part of the skull is abnormally small or misshapen and forces the brain downward. In simplified terms, it means the skull is crushing the brain. It’s very uncommon but this is due to a lack of imaging doctors are willing to perform, hence the reason a person usually doesn’t realize they have it until they’re an adult. Symptoms that go along with chiari that Rowen was actually experiencing in his 9 short months on earth are as followed:

Neck pain, problems with balance, poor fine motor skills, numbness of hands and feet, dizziness, difficulty swallowing accompanied by choking and vomiting, ringing in the ears, slow heart rhythm, scoliosis, sleep apnea, weakness in arms, wuick downward eye movements, and so forth.

Courtesy of Tiara DeCamp

Clearly, this is a lot for anyone, especially an infant. My poor baby had known pain his whole life and this breaks my heart. Unfortunately, there is no cure for a Chiari Malformation, but there is a surgery that can help ease the symptoms called a Chiari Decompression Surgery. The neurologist decided this was the best course of action and Row was scheduled for surgery January 7, 2020. All the months of being told I was paranoid from lack of sleep, that he’s healthy, etc. flooded my brain as the doctors explained all of his diagnosis. At this moment, I was so proud of myself for following my gut.

After a month of anticipation, surgery day finally came. I was terrified. My 9 month old was about to have brain surgery! Who wouldn’t be absolutely losing their mind?! But I tried to remind myself this would finally give my baby the chance to live. After 4 very long hours of surgery, the doctor finally come out to give us an update of how it went. Unfortunately, after removing a piece of the skull and attempting to cut into the brain, Rowen bled too much too fast so they couldn’t complete the surgery in full. This means he will need another surgery sooner than later, but I’m glad the surgeon made the best decision for the sake of my baby’s life.

Courtesy of Tiara DeCamp

It’s been almost two weeks now since the surgery, and from what they were able to do, we already see such a HUGE improvement. He is doing things now like sitting up straight and sticking his tounge out, giving kisses, crawling, laughing, waving, and clapping. Although this may not seem like a big deal for a 10 month old, this is HUGE to us. This really shows just how much pain he WAS in after all and how much better he is feeling! His older brothers Mayson and Lochlan have even noticed the huge changes! Every time they see Rowen sit up they will clap for him and yell, ‘MOM, LOOK ROWEN CAN SIT UP LIKE A REAL HUMAN NOW!’ Or he will crawl quickly after him and they’ll laugh hysterically because they’ve never seen him do it before this surgery. My favorite thing is the way my boys process the concept of the surgery their brother had. My oldest came to me the other day laughing and said to  me, ‘Mom, Rowen keeps throwing his cup on the floor over and over again and he thinks it’s funny. He keeps doing that because they had to take a piece of his brains out and he forgot how to use a cup, huh?’ (LOL.) I have some pretty incredible kids!

Courtesy of Tiara DeCamp

Although this is only the beginning of a life-long road, I feel such relief and happiness. To see Rowen crawling around with this huge stitched up cut on the back of his neck, yet happier than he’s ever been brings me to tears. But they are tears of pure thankfulness and happiness.

In closing, I hope this not only brings awareness to Chiari Malformation, but also maybe pushes parents who may think something is wrong with their child but afraid to speak up, to do so! I cannot urge this enough. If you feel like something is wrong with your child, be their advocate! Document, document, document and be prepared for a fight. They deserve it! Had we just listened to ‘he is healthy,’ he would have continued living a life in pain for who knows how long. You are your child’s voice!”

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Courtesy of Tiara DeCamp
Courtesy of Tiara DeCamp

This story was submitted to Love What Matters by Tiara DeCamp. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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