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My name is Sydney and our daughter’s name is Layna Lou-Joy. We are from a small northern Metis community called Ile a La Crosse. I found out I was pregnant with Layna on Oct 28th, 2022. I was 7 weeks at this time. My pregnancy was different with her. My previous pregnancies I never had any symptoms but with Layna, I was nauseous, tired all the time and just overall not feeling good. I went for my first ultrasound around Dec 9th/22 and my second one sometime in February/23 and this one was my anatomy scan and during this time the ultrasound tech couldn’t find certain things, so my family doctor sent me to have another ultrasound some place else. A couple days later I traveled 3 hours south to North Battleford for an ultrasound and now this time the ultrasound tech said everything looks fine and he doesn’t know why they sent me there and so I went on about my week.. a couple days later my doctor called me and she said I needed to go see a specialist in Saskatoon and that my ultrasound was abnormal, so at this time I’m freaking out wondering what’s wrong.

I go to my first appointment with Dr. Wesson in Saskatoon at JPCH and they found something abnormal in my scans but they said it wasn’t anything concerning and they wanted to monitor her and from then on I had to travel for ultrasounds / check ups every 2 weeks from Feb-June and each appointment it was always “we’ll know more next time” “she’s just looking small and fluid around the chest, nothing concerning." In April I decided to do an amniocentesis and asked to do Layna’s and I’s genetics because dad wasn’t on board at the time, the amino came back normal and genetics was going to be a little longer to see results.

Now fast forward beginning of June I started to feel sick and in a lot of pain and I kept telling my doctors I didn’t feel good and was going into our local emerg but because babies heart rate was fine I kept getting dismissed and sent home and that I was fine but to be honest I obviously wasn’t, Layna was clearly sick inside of me which caused me to be sick. I started feeling labour pains around June 11th and it went on for days so finally I went into the emerg in my home town June 13th/2023 and they said “you need to go to Saskatoon, you’re 3cm, another 1cm we’ll have to keep you here” and right away my boyfriend and I drove to Saskatoon as there were no planes available due to heavy smoke from the forest fires and as soon as we got to the hospital they induced me. About 24 hours later I had Layna on June 14/2023 @ 8pm. My labour was so different, I was so calm, not in a lot of pain, I felt more pressure than anything and I pushed maybe 3 times and she was here..

When she came out she was unresponsive, they quickly placed her on me but realized she wasn’t breathing and they started CPR on her then intubated her and took her up to the NICU… she was put on multiple IV’s, a PICC line, A high frequency jet ventilator (this pumped her lungs for her), she was put into an induced coma & paralyzed, receiving blood transfusions, getting nitric oxide, multiple chest X-ray’s, abdominal X-rays, Mutilple ultrasounds. Countless blood work. You name it she had it done. We had to wait a few weeks before she was stable enough to go for a CT/MRI. The first month was the absolute hardest on me and her dad, we were asked to consider signing a DNR more than once, her lung collapsed the first day and they had to place a chest tube, she also went septic, multiple infections, she just wasn’t in a good place the first month and they weren’t sure she was even going to survive but she did and she’s still here.

Layna was diagnosed with PBX-1 Gene mutation, from my understanding it is extremely rare, not that many cases in the world. The main things that affects her are her lungs, kidney and heart amongst other things. Her left lung is underdeveloped(left lung hypoplasia), she has pulmonary hypertension and she has a horeshoe kidney. We stayed in the NICU from June 14th-August 2nd/23 then transferred to PICU. They were able to remove her breathing tube mid August and she’s been without it since, at one point there was talk about putting in a trach but I said no immediately and that I wanted to give her a chance and if it 100% came down to it, it was still a no because that’s not a life I wanted her to live (not that I think there is anything wrong with a trach but I felt I just wasn’t comfortable with her having that) but we haven’t had to put one in so that’s great and I hope we never have too. It’s been trial and error between high flow/low flow during the day and bipap mask at night to give her lungs a break. She has never been discharged, all she’s known is the hospital, she’s never been outside so she has no idea what the air even feels like or the Sun or what the world looks like.

On Dec 16th/23 we were flown to Edmonton for Layna to have a feeding tube placed in her stomach, it’s called a G-Tube /fundo(to help with acid reflux) but this was to replace her NG/NJ tubes that were in her nose. Layna cannot eat by mouth as there’s concern she might aspirate. Because of Layna’s pulmonary hypertension she was required to have the surgery in Edmonton. Our biggest concern was Layna being setback and not being able to get the breathing tube out or worse, her having to go on ECMO or passing but Layna did amazing with the surgery itself AND recovered amazingly! We are almost a month post op (dec 5th today) and she’s tolerating her feeds well, growing great and just a happy girl!

After 225 days Layna was finally able to go outside for the first time ever in her life and she loved it so much! She felt the air, the warmth of the sun, she seen the blue sky. It was a very beautiful thing to see and I think I cried for an hour after. It’s the littlest things that matter the most to us.

On Jan 11th/24 Layna had a cardiac catherization procedure done in Saskatoon as she was stable enough to do so and her results gave us information that she had moderate pulmonary Hypertension and this procedure was to also see if they should close her PDA (hole in her heart) and after a discussion with her team it’s been decided she were to have this done on Feb 8th/24 in Edmonton, AB.

On Feb 5th/24 we were flown to Edmonton and layna had her PDA closure at the stollery children’s hospital on Feb 8th, we stayed until Feb 14th so she can recover for a few days then we got flown back to Saskatoon where she stayed in the PICU until Feb 28th she was stable to be transferred over to the Peds ward for the first ever time. However, a few days in we were transferred back to ICU as layna needed more oxygen and we didn’t know why as all her tests came back negative and X-ray was clear, she received nitric oxide gas at this time but she recovered after a few days and back to Peds we went. We spent 1.5 months in NICU, 7 months in PICU and half a month in peds.

After 281 days, March 21st/2024 Layna was FINALLY discharged!!

Layna’s journey has been a long one so far and she has overcome everything that was thrown at her, she’s beat all the odds, she’s our miracle and I am so proud of her amazing strength. I don’t know what the future has in store for us as this mutation is so rare no one knows how long she will live or what she will need medically in the future. We are taking it day by day but each day she shows us how amazingly strong she is. She has fought hard to be where she’s at and she deserves everything good in life. Despite what she went through she’s such a happy, silly, bossy girl.

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