Memoirs of a Mama: Autumn's Story

Autumn is only five years old but she already has her own story to tell.

I've mentioned before that Autumn was an amazing sleeper when she was an infant. We had a few weeks of round-the-clock feedings but after that she was a champ. She was sleeping six hours straight by the time I returned to work.

When Autumn turned two we transitioned her into a toddler bed. It was around this time that Steve and I started to notice that she is a "funny" sleeper. She tosses and turns all night and sleeps in strange positions. She snores like no one I've ever met (except maybe her Grandfather!) and drools excessively. She wakes up several times a night in coughing fits - which often leads to vomiting. Sometimes she throws up food, often times it's large amounts of mucus.

Ah, vomiting. We have had our fair share of vomiting, as most parents have. Autumn's sporadic vomiting was not only happening at night, as a result of these coughing episodes, it started happening during the day as well. It would typically occur after a meal - but not always immediately after. We also weren't able to pin point a specific food or liquid that was triggering it. We started cutting Autumn's food into bite sized pieces and making her sit calmly for 15-20 minutes after each meal, thinking maybe she has swallowing issues or a sensitive stomach. It started happening so frequently and became such a regular occurrence that my three and then four and then five year old would go to the bathroom, vomit by herself and then come and get one of us to let us know. Just writing that down makes me tear up.

When Steve and I started to notice these things - the strange sleeping habits and sporadic vomiting - we consulted our pediatrician. At first we were told that she's a normal two year old in every other way and these are things she will grow out of. After a year passed by and nothing changed, and the vomiting actually got worse (it's hard to keep a kid in daycare who vomits between lunch and nap time), we consulted our pediatrician again. At this point she started to suspect Autumn might have acid reflux. So we began trying out different reflux treatments. Prescription after prescription and nothing was making a difference. Autumn was now 4 and we still had no answers. It was at this point that we requested to see an ENT.

The combination of Autumn's snoring/drooling while sleeping and vomiting after eating made us think it had something to do with her tonsils or adenoids. Our pediatrician really felt it was more of a gastrointestinal issue and so we were sent to see a Pediatric Gastro Specialist first to completely rule out any type of reflux or gastro problem. We made the 2 hour drive to a nearby children's hospital where we met with the specialist.

He examined Autumn and listened to our story. He felt that it COULD have something to do with her esophagus but didn't want to do an invasive scope of that area if he didn't have to - and so we were sent with instructions to have a barium test done to once again rule out acid reflux as well as any digestive issues.

The barium test was performed and the doctor assured us that this child does not have acid reflux. She also does not have digestive issues. Back to square one we go. We returned to the children's hospital and again met with the Gastro Specialist. We agreed to move onto ENT and if they chose to put Autumn under anesthesia (presumably to remove her tonsils) then our Gastro doctor would join in the procedure and scope her esophagus at that time - essentially killing two birds with one stone. Oh, by the way Autumn is now 5.

Steve and I felt strongly that Autumn's issues were directly related to her having enlarged tonsils. We figured we would meet with the ENT, he would examine her and agree with us and we would schedule a tonsillectomy. Problem(s) solved!

Or so we thought.

I was unable to leave work the day of Autumn's appointment with the ENT so Steve drove her to the children's hospital and took her by himself. I got a call from him that afternoon saying that the ENT did not feel that her tonsils were large enough to warrant removal without further investigation and he had ordered a sleep study to see if Autumn has sleep apnea. I started ugly crying, at work, in front of my boss. The level of frustration I felt at this point is indescribable - I needed an answer not more issues.

A few weeks later Autumn and her Dad headed back to the children's hospital for her sleep study. I was frustrated but not worried. I was positive, because of Autumn's sleeping issues and a family history, that she has sleep apnea. Again, I figured she would be diagnosed, her tonsils would be removed and that would solve both issues. We received the results about a week later - and that's when our journey took an unexpected turn.

Autumn was diagnosed with sleep apnea - but not obstructed as I had assumed. Autumn has central sleep apnea. This is a much rarer version where her brain is not sending the appropriate signals to her body - that she needs to breath while she sleeps. It has nothing to do with her tonsils and everything to do with her brain. I was devastated. My devastation was only compounded when I immediately began researching central apnea while sitting in the doctor's office. What I found indicated that this type of apnea is only an isolated issue 5% of the time. 95% of the time there is an underlying issue - and the issues were pretty serious. We left the ENT's office with a referral to a sleep specialist because our ENT doesn't have experience dealing with this type of apnea.

I was a mess. I am a worrier by nature and becoming a mother has only exasperated that. The entire two hour car ride home I read and read AND read and the pit in my stomach grew.

What I didn't know was that behind the scenes my sister-in-law was hard at work. She is the Assistant Nurse Manager in the OR of our local hospital and a worried Aunt. Those two things combined worked miracles. My sister-in-law made a phone call to someone who made a phone call and an appointment was made for us to see a local pediatric neurologist two days after the central apnea diagnosis. Our pediatric neurologist, who I adore, examined Autumn and ordered an MRI. We needed to see what was going on in that beautiful brain.

I was petrified.

Three days after finding out Autumn has central sleep apnea we were at an imaging center getting an MRI done. We waited on pins and needles for the results. I got a call that the neurologist wanted to see us in his office to discuss the findings. I lost my shit. If a neurologist asks you to come in that isn't good. Oh, and did I mention that Steve was out of town on business? Yeah.

The next day my best friend and I headed to the neurologist's office. I think it was right around this point when I started holding my breath. I have known my best friend for 15 years - she is family - and I was so thankful that she was able to come with me. When things like this happen I am a tornado of emotions and she is a cool, calm and collected. That's exactly what I needed.

The neurologist explained that Autumn did have an abnormal MRI and his findings were that she has a Chiari Malformation. Never heard of it? Yeah, I hadn't either. One of the best explanations I have found comes from the Mayo Clinic:

"Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue (tonsils) extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward."

Basically, Autumn has brain tissue that extends into her spinal canal and leaves little room for spinal fluid to flow properly. This is causing her neurological issues (the central sleep apnea). Issues with swallowing and vomiting are also classic signs.

The neurologist explained that the malformation is at the root of everything - the sleep issues, the vomiting, everything. And the best part? It can be helped surgically.

I looked at him - using every muscle in my body to hold back the tears welling up inside of me - and said, "so she does NOT have a brain tumor" and he said No.

My best friend and I left his office feeling like that was a win. ANYTHING besides a brain tumor was a win. The neurologist's office was working on getting us an appointment with the neurosurgery department at the children's hospital. We also had an appointment to meet with a neurosurgeon the next morning. Although he would not be the doctor performing Autumn's surgery, he is one of the best local neurosurgeons and was going to give us an idea of what to expect.

My Mother-in-law and sister-in-law came to the appointment with me because Steve was still out of town. We met with the surgeon and he threw us a bit of a curve ball. He did not like the images we had gotten through Autumn's MRI. He saw two things that concerned him and he wanted to do a second MRI, this time with contrast, to rule out there being any other problems.

I felt like the rug had been pulled out from under me. The day before I had been told that the Chiari malformation was the only thing of concern - today we are back to tumor talk - it was almost too much for this Mama's heart to take. A second MRI had been scheduled.

The following day I received a call from the neurosurgeon's office at the children's hospital - they would like us there the next day for a surgery consultation. Although we had a second MRI scheduled we continued on as if the malformation was the only thing we were dealing with - we didn't want to hault the process in case it was. So the next day we packed up and drove back out to the children's hospital where we met with the neurosurgeon who will be performing Autumn's surgery.

That was yesterday.

The pediatric neurosurgeon examined Autumn and then pulled up her original MRI images. He said he saw where a second MRI had been requested and scheduled but he did not see a need for it. He had read the radiologists notes who originally reviewed the MRI (and who did not see anything else of concern) and agreed. Everything he needed was in these images and he was not concerned, in the least, about there being any other issues. She definitely has a Chiari malformation but that is all she has. She does not have any tumors, lesions or tubers in or on her brain. I made him repeat that sentence five times in five different ways.

And I took what felt like my first breath in a week and a half.

Autumn's surgery is scheduled for this coming Tuesday - exactly two weeks after she was diagnosed with central sleep apnea. She will be having a posterior fossa decompression surgery. The Mayfield Chiari Center describes the surgery better then I ever could

"A posterior fossa decompression is a surgical procedure performed to remove the bone at the back of the skull and spine. The dura overlying the tonsils is opened and a patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goals of surgery are to stop or control the progression of symptoms caused by tonsillar herniation, to relieve compression of the brainstem and spinal cord, and to restore the normal flow of cerebrospinal fluid (CSF). The surgery takes about 2 to 3 hours and recovery in the hospital usually lasts 2 to 4 days."

It's really, really scary but everything has been up to this point. We have told ourselves, and Autumn, that we are doing this to fix all of these things that Autumn has been suffering with basically since birth. Once the surgery is over and the recovery period has ended Autumn will experience her first good nights sleep - EVER. There will be no more sporadic vomiting multiple times a day, no more drooling, no more coughing fits several times a night. She will be so much more comfortable.

It's been a long and winding road full of questions but we FINALLY have our answer and it's a fixable one.