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I left my 34 week prenatal appointment with the knowledge that I would likely not make it to 38 weeks like we were hoping. I was not in the least bit surprised with this news as I have a history of premature deliveries, and was feeling many prelabour symptoms taking over my body prior to my appointment. My water broke 3 days later and though my contractions weren’t strong and regular, we went to the hospital right away for assessment. Not long after being hooked to the monitors, I had a buzz of what seemed like everyone around me prepping me for an emergency C-section as Liam’s heartbeat was dipping too low too often. We were moved to labour and delivery and I was given an ultrasound to double check that his was head down and nothing was wrapped around his neck. Everything at that time checked out fine and we were given the ok to move about the room. Our OBGYN didn’t want to stop labour from coming given my history, so everything from then became a waiting game. We weren’t going anywhere until baby was out safe and sound.

Liam was born February 26th at 1:50 am. He ended up coming out with the cord wrapped tightly around his neck 3 times which explained the low heart rate with every contraction. He was in respiratory distress and intubated almost immediately. I got to hold him for a quick photo and he was brought straight to NICU. Shortly after, we were told that his lungs were underdeveloped and that he wasn’t born with enough surfactant so his lungs were sticking together making it hard to breathe. Because of this, his heart was pumping extra hard to get his lungs to function. In order to avoid cardiac arrest, he was “paralyzed” which is essentially being put into an induced coma and hooked to a high frequency oscillatory ventilator to breathe for him. It was extremely uncomfortable and horrifying seeing him so lifeless, watching his little body vibrate while the machine pumped his lungs. For the next week, Liam underwent many examinations and tests.

There were so many big words being thrown this way and that, it was exhausting. Every day was met with improvements here and setbacks there but overall, he was getting stronger and moving closer to going home. Every line, every tube, every monitor etc that was removed over time was a celebration! March 4th, at one week of age, I held Liam while he was extubated. I finally got to hold him again and hear his sweet voice! He was a very vocal boy the more his vocal cords relaxed, we figured he was making up for the lost time. After 13 days in NICU, we were officially released! Out of 4 of my living children, 3 were NICU babies, Liam being our most intense experience. We were only there for 13 days but it seemed like an eternity. I feel for families who are there for extended periods of time.

While in NICU, the oxygen therapy, medications and IV drip all made Liam quite puffy so his eyelids were swollen shut. Once the swelling started going down, I was finally able to see his beautiful eyes. I noticed his right eye seemed quite a bit smaller than the other, and it was clouded over almost like an eye with cataracts. The Doctors set up an appointment with an Opthamologist following our NICU discharge and it was determined that Liam has microphthalmia, Persistent Hyperplastic Primary Vitreous and Retrolental Fibroplasia; a lot of big words which simply mean that he has a small underdeveloped eye and has no vision from it. We were glad to have a name to his condition and we were set up to see more specialists to assist through the journey, and then we went into lockdown and everything became a big question mark. We had so many unanswered questions and all of our appointments were put on hold.

Once things started getting back to normal, we got back on track with follow ups and specialists. The NICU team sent out a referral for a pediatrician as we weren’t assigned one in the hospital and we wanted to hopefully find out what caused Liam’s condition.

November 2020, Liam got fitted for his first prosthetic made by a very talented ocularist Jon Koroscil. It is quite an ordeal putting the cap in and taking it out. It’s almost like shoving a super thick and hard contact lense under your eyelid and to remove it, you use a little suction cup. Liam has a love/hate relationship with Jon. He loves to visit, but hates having his eye messed with, and I don’t blame him.

Just before Liam’s second birthday, we finally got assigned a pediatrician. He questioned Liam’s eye diagnosis as typically, both eyes are affected and there are often neurological and developmental delays which Liam displayed none of. We were happy that he was sending us for further testing like we had wanted as our Opthamologist didn’t think it necessary.

Liam’s MRI results last December showed some fluid buildup behind his right eye and for the next 6 weeks after that we were required to see our family optometrist to have pictures taken of the back of his eyes to keep an eye on things. Luckily, there has been improvement so we are now able to go back to annual visits.

We are currently awaiting physiotherapy at the hospital to work on his neck. Liam tilts his head to the right when he’s focusing in on things up close and if we don’t take preventative measures while he’s young, he is at risk of developing torticollis.

Despite all of his challenges in his almost 4 years of life, Liam is full of life and nothing slows him down. There are no developmental issues and he’s starting to catch up on the growth charts. Liam is starting to become more interested in his eye and his prosthetic cap. He will likely have challenges throughout his lifetime, but he has all the supports he needs in place to navigate it all.


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