Tuesday, 17 February 2015


I knew I was pregnant before I even took the test.  I felt sick.  My appetite was down. Overall my body just felt off - If I wasn’t pregnant than I definitely had to see a doctor.   Right from the get go, this pregnancy felt different.  It didn’t take long before the ultrasounds would confirm that something strange was going on.  The second ultrasound we had showed ChoroidPlexus Cysts in the brain, a thickened focal nuchal fold and what they thought was hydronephrosis on the right kidney.  If it was just one of these markers it wouldn't have been so bad but because there were multiple markers, these signs pointed to the possibility of some kind of genetic condition.  I was scared.  Did my child have something seriously wrong with him?  Was he going to be able to survive the pregnancy?  I stopped sleeping and took up the hobby of internet researching.  I think that is one of the ways I deal with the unknown… by trying to overcome the unknown through wrapping my mind around things.  This habit can be helpful when you have to talk with health care professionals but it also can add a whole lot more "What Ifs" into the picture.  We had to go down to London for another ultrasound and a consult with Genetics.  In London they found that the nuchal fold was not thickened and was within normal limits, that the cysts would disappear on their own and that the kidney was actually a multicystic dysplastic kidney and it would eventually just up and disapear.  At this point we did a blood test to rule out the trisomy syndromes.  (Down Syndrome, Trisomy 18 and Trisomy 13).  We were overjoyed when the test came back negative and we thought that any gentic issues were off the table.  I told myself that I could deal with a child that had only one functioning kidney.  Lots of people live long happy lives with just one kidney.  My next ultrasound showed that Gideon was not growing symmetrically.  He had intrauterine growth restriction.  Then while away visiting my father-in-law in Toronto after he had surgery on his arm for bone cancer, I woke up, went to the washroom and found myself bleeding.   I was sent to London and Hospitalized for 48hours.  I took 2 weeks off from work.  On the first day back to work I had another ultrasound. I work at a hospital so all I had to do was pop down to Ultrasound, have them wave their wand and then pop back into work.  Unfortunately, the ultrasound showed that there was a lot of restriction in my umbilical cord.  This means that there was not a lot of blood getting to the baby.  Again I was sent down to London and hospitalized for a couple of weeks under observation until they induced me at 37 weeks.  Labour and delivery were a breeze and Gideon was born a beautiful baby boy at 5 pounds and 2 ounces.  That’s when the surprises started to greet us.

Not only did Gideon have one bum kidney but there was a plethora of other things going on.  Gideon was born with what they thought was a hypospadias.  This is when the hole in the penis is in the wrong place.  (After a urology consult months down the road, it ends up just being a natural circumcision and nothing needs to be done at this point.)  He had a variety of dysmorphic features that made genetics interested: Low set ears, a high pallet, an ear pit, and a small jaw.   After being discharged, Gideon was found to have cataracts in both his eyes and microphthalmia.  Cataracts are when there is a clouding over the eyes and his were so bad that they had to be removed.  With adults they will put in permanent lenses to replace the ones that were taken out but with infants they have to wear contact lenses that need to be taken out and put back in every day.  Mircophthalmia is when the whole eye system is smaller than it should be.  This means that less information can get from the eye to the brain and his eye sight can be greatly affected.  Gideon also failed his infant hearing screening test.  We are still undergoing investigations as to what is going on with his ears.  Right now we know that he has a moderate to severe hearing loss in his left ear and a moderate loss in his right.  More updates on this are sure to come.    

Gideon has been slowly making progress.  There are multiple workers that come to the house regularly and he has about six different doctors he sees periodically.  Tomorrow Gideon will be having surgery on his eyes again.  Bizarrely, his cataracts have come back.  The eye surgeon says she has not seen a case like this in over 10 years.  Please wish us luck as we continue on our complicated journey. 

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