God's Faithfulness through Medical Trials

It’s kind of humorous when a new doctor asks us for our children’s medical history at our first visit; it’s quite extensive.  Here’s a brief rundown.

Caleb was born March 1, 2004 with a large omphalocele that ruptured during delivery thereby making it a giant omphalocele. What is an omphalocele you ask? It is an abdominal wall defect where some abdominal organs develop outside of the body in a sac. Usually it’s taken care of with immediate surgery, but Caleb had other issues to factor in. He was also born with two heart defects, small lungs and the possibility of having a genetic disorder that increases his risk of cancer significantly.  Since he was born breathing on his own (not expected in his circumstance) they wanted to postpone surgery and wrapped the sac in bandages instead.  After 5 weeks, we left the NICU to take our baby home with dressing changes twice a day, oxygen to help him breathe easier, an apnea monitor and a feeding tube that went through his nose to his stomach and a plan to wait 2-3 years to perform reparation surgery.  God had other plans.  While at a routine check up with the surgeon, Caleb’s sac ruptured right there on the doctor’s table.  We thought our 13-week-old baby was dying right in front of us.  Within 30 minutes he was in the Operating Room for the first of 8 surgeries, 5 of them in the next 2 weeks, to repair his tummy.  That next 5 weeks included serious shock, organ failure, a lot of doctors shaking their heads and much love and support from our church family.  When we left the hospital the second time as a family, it was with our 3 month old needing a feeding tube, oxygen, a central line to give him medicine straight to his heart and more dressing changes and methadone to wean him from heavy dose narcotics.

Since then Caleb has had 3 surgeries to repair his tummy, many ultrasounds to check for tumors as well as many tests on his heart to make sure the issues are not causing problems.  Today he looks like a normal boy (unless he lets you see his tummy). He was diagnosed with ADHD and an anxiety disorder about a year and a half ago. While there are no studies on what large doses or narcotics do to a baby’s development when exposed post-natal, we can’t help but wonder if the behavior issues are caused by his addiction. He still requires to be seen by a surgeon.

That’s our oldest. 

Our youngest, Josiah, was born with bilateral clubbed feet (his legs were straight but the feet turned in at the ankles – his toes were pointed right at each other).  While we began a long series of  treatments to correct this (and correct it, they did – you should see him run), we noticed that he was eating poorly and wouldn’t keep much down.  We checked with several specialists.  During an ultrasound, they found gall stones in our 3-month-old baby.  They also noticed that something wasn’t right with his kidneys.  Josiah has horseshoe kidneys; essentially the two kidneys are fused together as one.  There was also an obstruction at the UPJ – the point where the urethra leads out from the kidney which was causing some hydronephrosis.  This is particularly dangerous for Josiah because of the horseshoe kidneys.  On someone with normal kidneys, if one fails, they can live with the other – in Josiah’s case, if one side fails, the other will soon follow.  He’s had 4 surgeries in his almost 3 years including the removal of his gall bladder and 2 recently on the kidney.  He still sees a nephrologist and urologist; he requires ultrasounds every 3-6 months to monitor kidney function and check for cancer (he has a 62% chance of developing kidney cancer) as well as a more invasive MAG-3 scan this fall.

Some may say that our kids have probably had more than their share of medical trials.  Yet God has always been faithful to provide the support to bear us up under such circumstances.  We know He is sovereignly in control – He has never failed us and never will.