From Birth to Hypoparathyroidism

Zachary Isaac Klassen

 Zach was born on August 21, 2002 at Royal University Hospital in Saskatoon, Saskatchewan, Canada.  He is the second oldest of our four children.  Jacob (10)  Zachary (8)  Olivia (6) and David (4).  Zach was born at 34 weeks and weighed 5lb 11oz.  Within minutes of being born Zach started to make a drowning kind of cry.  He was grey in color and was taken to the NICU.  When we finally got to see him he didn’t look well and his chest was really heaving. 

At 5 hours old Zach coded and was put on a ventilator.  We were told he had no surfactin in his lungs.  He was given synthetic surfactin and then they tried to drop the amount of oxygen thru the ventilator, he coded again.  Over the next day or so they gave him a second round of surfactin.  They began to make attempts to take him off the ventilator.  He was on oxygen and then on room air. 

I began to try and nurse him.  He had a difficult time and would turn blue around his lips.  We were sent home and told to “watch” him.  We took Zach home when he was about 8 days old.

At home Zach continued to struggle with feeds.  He slept a lot and was very docile.  He continued to gain weight and we just thought we had a dream baby who loved to sleep.

On November 5, 2002 at 6am, I came into Zach’s room.  He was blue, his lips were very dark and he was completely lifeless.  Our neighbours performed CPR on him until the ambulance came. After about 8 minutes of CPR and suctioning him, he lazily opened his eyes and looked around.  He was very pale and weak.  We went to the Royal University Hospital by ambulance.  While in emerge he began to perk up...it was weird. 

We were admitted and that night they did an apnea tracing on him.  In 8 hours he desaturated 80+ times and dipped into the 60’s.  There were no obstructions.

 It was like flicking a light switch on and off.  Even the alarms and frantic nurses didn’t wake him.  We were told he had a brain tumour.  It took 1 week to do a CAT scan to confirm the tumour.  We were heartbroken and braced for the worst.  After the scan they told us there was no tumour and they decided to put him on anti seizure meds.  He had mild spikes in his EEG.  They thought the seizures were causing the apnea.  After a week of trying this, he still had severe desaturations when he slept.

The Doctors fought about what was wrong, who was right and who was in charge of his care.  We were scared and knew that we needed to take Zach to a children’s hospital. They took him off of the anti seizure med and put him on caffeine. 

We were told that he was “acting” like a baby born at 27 weeks (remember he is 2.5 months old now) and that he would “grow out of it”.

We moved our family to Edmonton, Alberta, Canada in mid January of 2003.  Upon arriving at The Stollery Children’s Hospital the doctors here also thought he had a brain tumour or a Kiari malformation.  They did an MRI to rule it out.  We stayed in hospital and they weaned Zach off the caffeine (it was awful).  They also started testing him for many different things.

They did a full sleep study and Zach continued to have the central apneas.  This bothered them because there seemed to be nothing wrong with him brain.  So they decided to do a laryngeal and bronchoscopy on him.  His pulmonologist came roaring out of the O.R.  He couldn’t get the camera down his airway!

Back to the MRI.  Zach had 2 compressions on his airway.  His artery taking blood to his right arm was “pulling” his airway over and then it ran alongside his spine and his left bronc tube was compressed by his spine.  All these compressions....no obstructive apnea.

They did a swallow study on him which he failed in flying colors.  They were baffled because he didn’t have “failure to thrive”.  We thickened his feeds.  They did a PH probe on him and determined he had GERD.  He was put on antacid.

They did not operate on the compressions.  We put him on oxygen whenever he slept or whenever he got sick (which was often).  This stopped the apneas.

We were in and out of The Stollery from the time we got here in 2003 till 2005.  Then he seemed to rally.  He had lots of developmental issues but the medical concerns kind of took a back seat.

In the summer of 2007 we began to notice Zach’s energy level was not great (not that it had ever been “normal”).  He would almost pass out.  We held him back from kindergarten as he still slept in the afternoons and his speech was so delayed. He was always behind on his developmental milestones. 

We did lots of early education programs.  Everyone loved Zach!  He was calm and sweet and loved to snuggle.  He could sleep anywhere!

School started and Zach’s developmental issues came to centre stage.  Nothing came easy for Zachy.  School work, friends, fatigue and the endless twitching.   His anxiety would get higher and it was so hard to calm him down. 

He would jerk and twitch. Get angry and cry the saddest cry you could imagine.  He was changing.  No longer our calm and docile Zachy.  I took him back again and again to our Paediatrician.  He told me it was Brain Damage from all the trauma when he was small.  This went on until the fall of 2009 when he finally referred us to a developmental Physiologist.  Zach needed help in school.  His anxiety and extreme exhaustion were creating so many learning problems.

By December of 2009 I thought I was losing my mind.  Our boy was sick.  Something was wrong and nobody was listening to me.  On New Year’s Eve, Zach (along with a bunch of other relatives) caught terrible stomach flu.  We thought this was going to do him in.  He lost 10 pounds.  In the weeks following this flu I made several trip to our Paediatrician.  He assured me it was all in Zach’s mind.  That it was a really bad flu and that everything from the fatigue to his severe abdominal pain and the twitching and shaking was a result of the Organic Brain Damage.

Zach was so sick.  We pulled him out of school in February (2010) and our Developmental Physiologist (a wonderful man) placed him a special program at the Glenrose Hospital in Edmonton.  There are only 7 kids per class and 7 staff.  After 2 weeks of being in that program, Zach’s doctor told us that he and the staff could see that Zach did have some developmental delays; however they were very concerned that something was “medically” wrong with Zachary.  They agreed with our concerns and that gave me the confidence to confront his medical doctors.

On March 18, 2010 after 2 years of this downward spiral Zach was on, I packed him up in the morning and took him back to The Stollery.  Not to our Paediatrician in the clinic but into emerge.  I had decided I was not going to leave that hospital until they found out what was wrong and if they couldn’t find ANYTHING wrong with Zach, they would have to admit me because I was losing my mind.

They did the typical electro light work up and said everything was “within a normal range”.  I would not back down, so they ran some more tests.  The whole time Zach is twitching and jerking.  He is pale and unhealthy looking.  All they did was look at the test results...not at him.  After 8 hours in emerge, they sent a Doctor in to try and discharge us.  I told him to “look” at Zach.  Finally this Doctor listened.  He looked past me and went to Zach and tried to talk to him.  Zach was distant, in a fog.  (It’s like he can hear us but has no ability to respond).

The Doctor left the room and came back about 10 minutes later.  He said he wanted to “test” his Calcium.

They drew Zach’s blood and 45 minutes later he walked back into the room...the Doctors eyes were propped open!  He told me Zach’s Calcium was at 1.8 (range 2.2  -  2.7)  I said “is that bad?”  He walked passed me, went up to Zach and gently tapped his head close to his temples.  Zach’s face contorted and spasmed....it was crazy and scary. 

All of Zach’s life we had been looking for a brain tumour or something in his nervous system or a gastrointestinal problem.  They had checked him for several Genetic disorders all to no avail.  I was well read on these subjects...but not endocrine diseases.

I asked the doctor “what do we do?”  He said, “I don’t know”.

Over the next year we were in and out of the Hospital. We have struggled with getting the Doctors here to research and help him.   Zach’s calcium waxes and wanes and he is very symptomatic even when in a “normal” range. 

That is the condensed version of how Zach got from birth to Idiopathic Hypoparathyroidism.  His life has been a rollercoaster of suffering and unanswered questions.  We know that Zach’s health problems are chronic.  Our desire is to give him the best quality of care.  To give him the opportunity to live a life free from symptoms as much as possible.  He is a beautiful, compassionate boy whose greatest desire is to be accepted and understood.

Sincerely, Perry and Tanis Klassen

Spruce Grove, Alberta Canada