LISTENING TO YOUR ‘MOMMY VOICE’
 

- Jennifer Blinn, Mother of 5 and Contributing writer

Some call it a mother’s intuition.  Others, the feminine instinct – sort of “sixth sense.” Me, I call it my ‘mommy voice.’ And though I’ve been a mother since the age of twenty, with fourteen years and five children in between, it is only now, with a 21-month-old daughter facing significant developmental problems that I’ve come to understand just what a divinely inspired gift this ‘mommy voice’ truly is.

You know that spine-tingling jerk that perks us up from amongst the jungles of folded laundry and sends us scrambling with blitzkrieg speed into the kitchen to snatch our tottering toddler off a precarious perch? That’s but child’s play.  I’m referring to something infinitively more subtle and far more audacious; that still-small voice deep down inside – you know the one that inspires you to look at that highly-paid ‘expert’ in the eye, no matter how many degrees and years of schooling he’s using to justify his unwavering assurances that everything will be all right, and tell him he has absolutely no idea what he’s talking about. Well, maybe we don’t say it quite that directly. But we’d like to. Maybe you know it better as the voice that causes us to stand like a bastion against all common sense, with our husbands looking on like we’ve completely lost our minds, and, if we’re honest with ourselves, it might even make us begin to question whether they may just be right.

We all have it, and if you’re anything like me, it can feel like a real leap of faith to not just listen to the ‘mommy voice,’ but to trust it. Nevertheless, it is a voice. I have discovered that it can only be ignored at the greatest of risk. See, my four previous children had all been born in perfect health at decent hospitals.  All were completely natural with no problems whatsoever. (I even caught my fourth as he was coming out while the nurses were scrambling for monitor equipment after I had been wheeled into the delivery room on the fly in the midst of heavy labor!)

From the beginning, however, our fifth was unique. Coming to us completely unexpectedly, we were unprepared (we had SO thought we were done that we had given away all our baby stuff … we since discovered how babies are made and have taken care of the problem!), we were, after the shock wore off, extremely excited.  So much so that we were even planning our first home-birth. But a diagnosis of gestational diabetes nixed those plans and we responsibly headed to the hospital for another uneventful delivery. Three hours later, out came precious little Luli Jayne, born out of a natural, normal, non-medicated birth. And other than the fact that she wouldn’t or couldn’t open her left eye, she looked a lot like our oldest, Madison, who was then 13 and blessed enough to be in the room, witnessing the birth of her baby sister with wide-eyed wonder.

An initial check-up by the house pediatrician, however, heralded the first rain-clouds over our joyous little picnic. The left side of her face was paralyzed. Come again? Did you say paralyzed? Four previous children and never had we even considered that a doctor might tell us something could be wrong.

I can still remember clutching her close and staring desperately at her face. Blue eyes, pug nose, a Shirley Temple dimple in the corner of her mouth. Oh, and a cute little seahorse shaped birthmark right on her forehead. This, the doctors assured us, would be gone by the time she entered kindergarten. It’s the fuzzy one on her lower back that gave the doctor pause. Without ever really informing us of the reason for alarm, the doctors took some “routine” x-rays and then recited the mantra-like assurance that would become so familiar over the next twenty months: “everything is just fine.”

But as we brught Luli home and we got to know each other, we began to notice other little ‘non-problems’ as well. The left side of her neck, just under her ear, seemed distinctly concave. The doctors told us her foot must have been wedged up there in-utero and, like all her other issues, this will fill out in no time.

Another thing we noticed was that Luli’s lower jaw is slanted down on one side. A concern in its own right, this also caused her to nurse only on one breast (anyone who’s ever breast-fed should have no problem picturing how this left me rather lopsided). On top of all this, when held up to a mirror, Luli’s facial features proved highly asymmetrical, her left side being significantly smaller than the right. Yet again, we were told not to worry and that everything would be normal by her first birthday.

While this seemed to satisfy my husband, I was reaching a breaking point. My ‘mommy voice’ had been at full force for quite some time, and it finally got to a point that I could no longer ignore. This was my daughter, and I knew without a doubt that something was wrong. Everything wouldn’t be alright. Her problems weren’t just going to ‘work themselves out.’ I didn’t know how or why I knew this, but as God is my witness, I knew it and I wasn’t about to sit idly by and watch possibly treatable problems become permanent.

I scoured the Internet for answers. Little bits of information floated to the surface here and there like debris from some tragic shipwreck, but nothing resembled a diagnosis. That is until I stumble across, (or was divinely led to), an article about a condition called Torticollis. The symptoms of Tort are characterized by a constricting of the muscles or an abnormality in the skeletal structure that causes the neck to be tightened and pulled to one side, resulting in all sorts of malformations.

Needless to say the doctor’s office was my first stop the next morning. Armed with reams of online research, I am a doctor’s worse nightmare; a mother with just enough information and inexperience to cause one mammoth-sized head-ache. Yet when I showed the doctor Luli’s head tilt and how she only looked to the right, he eventually reluctantly agreed – Torticollis it is. Pulling teeth would have been far easier, yet there it is. Finally, a diagnosis.

The standard treatment for Torticollis is physical therapy. Luli started immediately with intensive exercises once a week with a therapist and daily stretching at home. I joined an online message board and began chatting with other moms of babies who also had Tort. Let me just say, who needs Med School when God gave us the Internet? (Kidding … but only a little!) I found myself linked to an amazing community of women who had been talking about my very experience. With little help coming from the HMO establishment, there was no other hope but to join together and pool every scrap of knowledge and information we could dig up, like spies collecting intel for the Resistance. Before long I found that I was actually helping other moms who were just as lost as I had been.

Meanwhile, we started to notice that Luli’s head was “off” – flat on the back right side and becoming more and more so. On top of this, her right ear and right forehead were being pushed forward by the pressure of her head resting in a constantly tilted state. Again, the doctors told us not to worry about it, and again, my ‘mommy voice’ screamed back with silent rage-filled protest.

Once more, I turned to the Internet for answers. Thank God for the Tort group. Many of the babies represented there experienced these same symptoms. This condition, I learned, is called Plagiocephaly or Plagio. It basically means a misshapen head. I pulled back on the boxing gloves and marched back into my HMO armed with even more research. This time I at least got to see a cranio-facial team. It took many weeks of begging, threats and tears, but finally I got them to prescribe the only effective means of treating Plagio: a cranial remolding helmet. Perhaps you’ve seen a baby at the market or park wearing something that looks straight off the football field. If it was a fetching shade of pink with a cool skull and cross bones decal on the back, yep, you’ve met Luli. Also known as ‘bands,’ the purpose of a helmet is to help reshape and redirect the growth of the baby’s head, forcing the skull to form into the prescribed correct shape.

I joined an online Plagio group which, again, greatly helped me navigate the physically and emotionally demanding times of a baby wearing a helmet. Luli wasn’t too happy at first but soon became used to it and then even preferred to wear her helmet whenever she could.

As Luli grew, she began to exhibit developmental delays. She didn’t roll over until the day after she received her helmet at six-and-a-half months. She would never learn to crawl, but instead scooted across the floor in a spinning fashion, her legs twisted oddly to the side. The left side of her torso grew tighter and she carried one hip higher than the other. Ironically, however, Luli learned to walk at the very early age of eight-and-a-half months. Maybe the helmet gave her that extra boost of confidence to just go for it. What did she care if she went crashing down? She was well padded! But as she learned to run, it became apparent that she could only saunter forward with a twisted, sideways gait.

I kept track of all these odd little things that popped up with a perseverance equaled only by the utter apathy shown by the doctors who never seemed to piece anything together or find the financial motivation to deem any of Luli’s symptoms significant.

By twelve months of age, I finally pestered, annoyed and cajoled the doctors to order an MRI of Luli’s brain. The hope was to see if any of her symptoms could be the result of brain damage. None is found. This is certainly a blessing, but still something of a double-edged sword. How much could I really trust the doctors? They had never been very forthcoming before. Part of me is greatly relieved that nothing was found, but then there is the ‘mommy voice’ calling out from the abyssal depths of sanity. Was I turning into one of those wacko news stories you read about where the mother actually wants something to be wrong with her children? Sometimes I wished I could just make that pestering little voice go away, like Bugs Bunny flicking the tiny ‘good angel’ off his shoulder to stop its yammering about the ‘right’ thing to do.

By eighteen months, Luli still had persistent Torticollis –  something the doctors repeatedly told me should have resolved by twelve months. Perhaps I wasn’t going crazy after all. Perhaps there was something bigger going on here. I made more appointments which led to more debates. Physical therapists told me nothing could be done without surgery. Surgeons told me she needed physical therapy. Orthopedics said it’s a neurological problem. Neurologists said it’s an orthopedic problem. The passing of the buck got so bad and I raised such a fuss that finally Luli’s case went before the Oversight Board of the HMO … action, at last. They ordered a CT-scan of Luli’s neck. It came back showing ‘rotatory subluxation’ – a twisting of the upper vertebrae in her neck which led to yet more appointments and debates. The neurologists finally ordered a new MRI, this time of her complete spine, top to bottom.

The results left me in shock, and yet strangely it all made sense. Turned out that Luli has Syringomyelia, a rare chronic condition of the spine where pockets of spinal fluid, called Syrinx, have formed inside the spinal cord. These pockets put pressure on nerve endings and can grow as she gets older, potentially causing further damage to her spinal cord and nerves. The long-term symptoms can range anywhere from nothing to chronic pain and headaches to paralysis.

As I write this, we are still trying to get to the cause of the Syrinx. There are multiple causes as well as multiple points of view. I think this may be the beginning of a whole new season of sparring matches (err, doctors visits).  Yet, as much a headache as this has been, I am well aware of how fortunate we are to not be dealing with the far-more-dire conditions that many other parents must face. Despite all I’ve just relayed, Luli is truly blessed. This isn’t Cancer or some other terminal illness. There are many, many parents out there who have fought far harder and longer for their children then I could ever imagine. My desire is not to bemoan our situation and boast about how tough I’ve had it. Rather, my hope is to encourage parents not to give up or give in, no matter what conditions their children are facing.

I am so happy that I kept persisting for Luli’s sake, and that I didn’t accept the “it will get better on its own” answer that I got from so many doctors. Mommy knows best. God gave us that small voice deep down inside, and not anybody else, because he gave that child to you and not anybody else. No one else can love them like you, care for them like you, fight for them like you. So when your mommy voice is speaking, please, please, please, listen to what it is saying.