Early May while in Toronto for an appointment I decided to pop in to The Hospital For Sick Children and request records relating to any medical conditions I have that I might be unaware of. A lot of times those with facial differences have other conditions that tend to be related to the facial condition and I became curious. As much as I love my mom she did a piss poor job of keeping records and as I grew older I wasn’t able to ask her questions relating to my time in the hospital as any attempt to engage in that type of conversation was met with either “I don’t know”, “I don’t remember” or just straight up silence.
So I got what are referred to as Clinic Letters and Discharge Summaries. I attempted to write a blog post before detailing these but it wasn’t working out the way I wanted and remains unfinished. My new approach will be to split them up in to years and dive in to what I remember and what on these really surprised me. The records span the years of 1981 to 2008. This entry along with the setup above will explore just 1981 as there is only one entry.
The following is a summery of the discharge report.
The first part tells that I was admitted on September 16th, 1981 and discharged October 22nd, 1981. This marks my first surprise. I was under the impression that I spent a lot of time in my local hospital before being flown to Sick Kids where I thought I spent another long stretch. This revelation makes me want to get my reports from my local hospital as I do know I spent time in the local NICU as I’ve had a conversation with a nurse who upon seeing me years ago remembered taking care of me for an extended period of time.
The next section talks about the Maternal History stating “Mother gravida IV, para III”, using good old Google I learned this means she had 4 live births but only has three living children. This wasn’t a shock as I learned of my sister’s passing from an early age. It also was no surprise that my mom went full term, having a normal delivery.
Next up is a sectioned titled “Neonatal History”, shows I weighed 2.190kg (4.8 pounds), this was a bit of a surprise thought I was 4.5 pounds. It mentions “dysmorphic features were noted at birth”. The mystery here is if my mom knew ahead of time to expect this, I’ve heard both that it was a surprise and expected. Guess both of those could be true but this one will remain a mystery.
The next section lists the problems as the doctor’s saw them so going to list them as they did.
Problem No. 1: Ophthalmology
There are two pretty big paragraphs in this section. Pretty much listing all that was wrong with my eyes and they are:
– A right upper lid mid-coloboma
– Total absence of the lower mid lid on the right side giving minimal exposure
– On the left there is almost a complete absence of left upper lid
– Incomplete development of the lateral canthus and left lower lid
– Exposure keratitis of the left eye with corneal ulcerations
– Absent left tear duct
What was surprising to me here is the fact that my right eye was also effected by my facial difference. I was only ever told that everything on my left was impacted. There is also no mention of the dermoid cyst that is present now and has been there for as long as I can remember. Essentially in this section they talked about taping my eyes partially shut to protect them from exposure and ulcerations. They used a few different ointments and eye drops. As I get older my eyes seem to be going down the crapper but there is no indication from this that it could have been prevented.
Problem No. 2: ENT
This second section is smaller, they go on to describe my abnormal feathers which are:
– Bilateral accessory auricles and skin tags
– Small posteriorly-rotated ears
– Left external auditory meats ends blindly while right is normal (talking about the ear canal)
– Broad bifid nose with a skin tag
– Nares are present but appear small (meaning nostrils)
– Tongue deviates to the left
– High arched palate with sever micrognathia
– Left side defect of the mouth with macrostomia
Surprise here is that again the right side was impacted as this was where the bulk of the skin tags were. I knew I was born with them as my mom mentioned them but I assumed they were on the left side I also had no clue one was on my nose but that does explain the odd dimple like shape on the lower right side. I know my ears are not where they should be in relation to everyone else’s, it’s made finding ear phones every hard.
Problem No. 3: Plastics
Pretty small paragraph here, only a few sentences that talk about how the plastic surgeon would be co-ordinating my treatment. They expected to do my first surgery when I was two or three months old.
Problem No. 4: Neurology
Again a small section stating no neurological deficits found. However they did find a lipoma midline in the brain. I was shocked to read this I had NO idea that the brain tumour I thought was a recent discovery was in fact old news. They didn’t give dimensions so no clue if it has grown over time or if it’s always been 3cm x 1cm. This would have been handy to know growing up.
Problem No. 5: Genetics
This whole section was a surprise. To be honest I didn’t think they looked at genetics back in the early 80’s. This section reads “she has normal chromosomes, and the diagnosis is a combination of frontal nasal dysplasia and branchial arch problem.” From what I can tell this means what I was born with is in no way genetic but just poor luck. Genetics have come a long way since I was born so if I was ever about to think of having kids I’d like to have this confirmed so I know the risks of having a kid born with a similar condition.
Problem No. 6: Nutrition
Not a whole lot in this paragraph it goes in more detail about how I was fed. When I was first brought in I was fed via orogastric tube constantly however after a barium swallow test showed no issues with me being able to take food by mouth they thought they would try bottle feeds. This seems like it was a pretty big failure as I had a poor suck response and took next to no food via the bottle so they switched to a combo of bottle feeds and NG tube. They seemed pleased with my weight gain as I was 2.720kg (5.9 pounds) at the time of discharge. They seemed more concern that my head circumference was smaller than expected, went from 32.7 cm at birth to 34.7 cm at time of discharge. Not sure how much growth is normal in a newborn of just over a month old. Again not a lot of surprises here my mom told me that when she was home she fed me via eye dropper. However I’m not sure why that was and why she didn’t continue the NG tube feedings. My guess would be that the formula, tube, and other supplies cost money we didn’t have.
Problem No. 7: Other Systems:
This was the paragraph I was most interested in, this would really tell me if there were any other problems I need to be aware of. But according to the long winded paragraph everything tested came back normal, that includes my heart, lungs, gastrointestinal, everything. The major concerns were my feedings, my eyes and the rest of my face.
When discharged I was taking the following medications:
– Duratears ointment to each eye q.2.h (meaning every 2 hours)
– Sodium Sulamyd eye drops to left eye OD (this is confusing since they wrote out left eye and wrote OD which stands for right eye)
– Zinc Oxide to buttocks (every baby needs this)
– Normal saline drops to each nostril prior to feeds
It’s odd to read “talked to the Loker’s since my dad passed it mid 1983. I always wondered what his take was on all of this and what questions he asked.
That’s it for Part 1, I will try to get these written weekly if people are interested.