Two years . . .

I remember it well, my fourth child and my longest labor . . .Henry was born after 13 hours and I laughed when I saw his thick jet black hair.  Whoever said that kids with thick hair give you heart-burn was right, I had the worst heart-burn of my life when I was pregnant and Henry of course he had severe GERD and colic.  I'm not sure what the hair has to do with it, but that old wives tail may have a bit of truth to it!  The neat thing about Henry is that he was the answer to my oldest daughter Hannah's prayer to have her baby brother born on her birthday.  And so today she turns seven and he turns two.
 
I sit in awe today, and waves of nostalgia wash over me.  I've been a mother for 7 years.  How did that go by so quickly.  I remember when I brought my first daughter out in public as a newborn.  I remember a mother I met in the store; "I remember when my children were that little . . . it goes by so fast, cherish it." she said.  Her words stuck with me, the longing in her eyes warned me of a time in the future, when I would actually miss those nights of sleep deprivation, nursing and rocking a newborn.  She was right, it was gone in a blink of an eye.

I sit in wonder and awe that God choose me to be the mother of these precious and beautiful children.  Me, a flawed , impatient and imperfect person.  He gave me these beautiful, spirited, funny children, a gift beyond anything I could have ever imagined in my life.  I am indeed blessed.

The past two years has gone by faster than any previous years.   It was like a world wind of tests, doctors visits,  fears and worries.  It was a pit of darkness and nearly despair, and a wilderness of unknowns and a deep thirst for answers.   At times I was gripped with panic and despiration, the terrible helplessness in not knowing what was wrong with my son, or how to help him.  Some questions are still unanswered.  Why is Henry still aspirating?  Why is he still underweight?

I've had him on an elimination diet for over 6 months.  His stomach issues have improved, it's not quite perfect, but the diarrhea is mostly gone.  He still has to drink liquids very thick, or else he coughs and his chest gets rattly and congested with aspiration.   In case you were wondering, we chose to hold off on the swallow study, and yes the allergy testing too.   Maybe you wonder why.  Well, Henry doesn't have any symptoms of true allergy, he has "intolerance's" to many foods.  He has had blood work in the past, as well as skin testing when he was younger.  When I give him dairy he doesn't swell up or get hives.  He has diarrhea;  he burps and has a lot of reflux sounds in his gut.  So  I opted to not put him through any more testing as of yet and to try to continue on this diet.  Also, he has had at least four swallow studies in the past year.  All of which showed that he was still aspirating.  I wanted to give his body more time to heal from the inflammation that might have been caused by food intolerance or the FPIES that he was recently diagnosed with.  The doctorsfeel if he has not outgrown his pseudo-laryngeal cleft (Cincinnati children's determined that he has something LESS than a type one cleft which is the smallest size cleft) that they would attempt to sew up the grove in his larynx in hopes that this would stop his aspiration of thin liquids.  I guess, I am not quite ready to do the surgery.  I have seen some progress in little Henry, and when given small amounts of water with a cup, in which I can control the sips, he doesn't choke unless he takes it too fast.  The confusing part is Henry's aspiration is silent, so we usually don't see the signs of it right away, until a few days later when he is sounding "gunky" in his throat like he has to clear it, he also starts sneezing a lot and then coughing and much later wheezing.   In other words, I am not convinced that a surgery would fix Henry's aspiration.  If have learned anything about aspiration in the past two years, it is that there are many reasons that a child aspirates, it is not always as clear cut as having a laryngeal cleft.  Sometimes surgery helps, other times, there are more things involved, such as reflux or GERD and in Henry's case also food protein intolerance.  I am not fully convinced that a surgery will "fix" him.

All this to say, that we are sort of in a holding pattern.  I am okay with this.  Last year on Henry and Hannah's Birthday I called 911 because Henry was gagging and going limp.  It was a horrible day.   Looking back on it, I think he was possibly having a delayed reaction to the food he had eaten earlier, but it took me nearly several months to find out that he had FPIES (Food Protein Induced Enterocolitis Syndrome).  It has been a long, rocky road.  I have been  tried  and stretched and today I am a thousand times thankful for today:  the present moment.  Today my son is rosy cheeked and happy, today he is eating and drinking by mouth and not by G-tube like he was last year, today he is making funny faces and running around the house being a normal toddler.  Today he is off ALL of his medications, he is not wheezing, he is not at the hospital.  He is home.  I know that others who read this are not were I am yet, I maybe you are at the beginning of the journey to answers and hope.  Henry is not perfect, there are many foods he cannot eat, he cannot drink liquids without thickner, but I choose to look at all that he can do and all that we have today.  I hope to give you hope for a better tomorrow.  I hope that my today will be yours soon.

Symptoms of laryngeal cleft

So what in the world is a laryngeal cleft? I'm glad you asked. There are four classifications of clefts. ENT's use a measuring system to classify the type, such as Benjamin and Inglis's classification scale (see link). My son Henry has a type 1a laryngeal cleft. A laryngeal cleft is a communication between the "tracheal and esphogeal axis.[1]" These two structures are normally completely separate. A cleft allows liquids or food, to enter the lungs rather than passing straight through the stomach via the esophagus. Aspiration occurs when a foreign substance enters the lungs. Since infants or children with clefts are chronically aspirating; they typically present symptoms such as chronic cough, wheezing and recurrent pneumonia. The severity of symptoms may vary between patients. While one child may be in and out of the hospital with pneumonia and recurrent respiratory infections, another child with the same level cleft might only have minor symptoms and be relatively healthy. Many parents report that their child has a "rattle" sound in their throat or that they feel a rattle in their child's chest when they breathe. Unfortunately, these symptoms mimic other common childhood illnesses like reflux, asthma and allergies. This overlap in symptoms often delays diagnosis and many parents become frustrated in the interim.
If your child has some or all of these symptoms it is important to keep a journal of symptoms and when they occur. Consider keeping track of your day and what your child eats and drinks. How does he/she sound before she eats? How does he/she sound after? Does your child tolerate certain foods/drinks and not others? When did the symptoms begin and how long have they been going on? Keep track of phone calls you make to doctors and tests that your child has done. This way you can keep your child's information in one place and have one file to show other health care professionals. Keep in mind that you are your child's advocate. If you feel that a doctor is not listening to you, tell them how you feel, if they still don't listen, change practitioners. Be persistent. If you know that something is "just not right" with your child, keep track of the symptoms and keep the doctor informed of your concerns. Consider finding an expert. For instance, if your son continues to have respiratory problems and the pediatrician doesn't seem to know what to do, do some research and take your son to the best pediatric pulmonologist (lung specialist) in your area.
Some important tests in diagnosing laryngeal cleft might include: Modified Barium Swallow Study to diagnosis dysphagia (difficultly swallowing) and aspiration; Upper GI series to differentiate between reflux and other congenital anomalies such as tracheal esophageal fistula; PH probe to diagnose reflux. The doctors might run other tests such as an MRI to rule out central reasons for aspiration or endoscopy to assess the GI tract and other causes for swallowing problems.
The only definative way to diagnose a cleft is with a bronchoscope. This is a scope of the airway which is done under anesthesia usually by both the pulmonologist and ENT doctor. If your child was just recently diaganosed with a cleft, please see my links list for a support site and more information.


Disclaimer: the above information is based on personal experience and research. If you have concerns about your child's health seek medical advice.

References
1.Laryngeal Cleft
Stéphane M. Pezzettigotta, Nicolas Leboulanger, Gilles Roger, Françoise Denoyelle, Eréa-Noël Garabédian
Otolaryngologic Clinics of North America
October 2008 (Vol. 41, Issue 5, Pages 913-933)"