Brynlee was born with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), a rare and severe underdevelopment of the left side of the heart, accounting for 2-3% of all congenital heart diseases. To survive, HLHS patients require at least three open-heart surgeries, Norwood, Glenn, and Fontan. The Stollery has mostly been her home, although she has spent brief periods at home with us. I apologize in advance because this will be a novel, but this is our reality – this is our life. 

When Brynlee was three days old, she had her first open heart surgery. It was a successful surgery and she recovered well. However, during the surgical procedure, she suffered damage to her right vocal cord and right diaphragm nerve. In addition to having difficulty breathing due to only one side of her diaphragm moving, she was also unable to drink her entire bottle because of the risk of silent aspiration so she needed to be fed mostly through an NG tube. We also had extreme difficulty weaning her from oxygen during this recovery time and there were few answers as to why. We were sent home with her on oxygen but that lasted only one week. During a routine cardiologist checkup, we discovered that Brynlee’s oxygen saturations had been in the 60s which resulted in her being readmitted to the Stollery. Days later she went in for her second open heart surgery as the surgeon needed to upsize the Norwood sano (a shunt delivering blood to her body) and to widen her pulmonary arteries with artificial tissue as they were narrowed. Brynlee came out of this operation better than she had ever been and was successfully able to wean off oxygen completely. We were able to go home with her after a week of recovery. 

We had a good first evening at home with her until the following night when things took a turn for the worse. Brynlee became extremely agitated and unable to settle no matter what we tried. The following morning, we took Brynlee back for another routine cardiologist checkup and Dallas and I began to cry to our team as it became clear that something was wrong with our daughter. She seemed to be in an extreme amount of pain and was readmitted. The Stollery team ran all the tests that they could at the time, and nothing came back as alarming. Three days later when they went to remove her sutures from her chest, her skin and breastbone fell completely open. Brynlee had to be rushed in for an emergency surgery that evening as the chest wires that held her breastbone together failed to heal, and she suffered a minor chest infection due to equipment failure. Thankfully she recovered well from the surgery and her chest started to heal properly.

Unfortunately, during this healing time, she started to suffer major feeding intolerances which lead her needing to have yet another surgery called Nissen fundoplication (part of her stomach is wrapped around her esophagus to help decrease the amount she vomited). She was at high risk of silently aspirating as well as failure to thrive due to lack of weight gain. She also had a G tube placed during this procedure which is a more permanent feeding method as Brynlee no longer had an interest in feeding orally due to all her setbacks with surgeries. After this surgery Brynlee began to thrive! She gained weight and no longer was vomiting her feeds. We were able to bring our baby girl home for an entire month!! 

We had a heart catheterization booked for her as she was now needing her next surgery, the Glenn, which is typically done around the 4–6-month mark. We went in that morning for our appointment, but things took a turn for the worse. While waiting for her heart cath, Brynlee spiked an extremely high fever and was agitated and lethargic. We canceled our cath procedure and were readmitted into the Stollery. After many tests, it was discovered that Brynlee had a UTI that turned into sepsis. She began an aggressive course of antibiotics to treat the sepsis. She also started having oxygen desaturations which was a clear sign she needed her next surgery. We opted out of doing the cath because of the risks given with her having an infection and agreed to the less invasive testing. We were told that this next surgery was going to be amazing; that she would be more stable and have a much better life. We couldn’t wait for this – we couldn’t wait for our baby to FINALLY be just that, a baby. Little did we know, this would be the worst surgery yet. 

On July 12^th, Brynlee had her Glenn procedure. She came out of the surgery but instantly was having a hard time with her new blood flow, which can be expected so we were trying not to panic quite yet. They extubated her the next day and she had to wear a BYPAP mask which keeps positive pressure going to her lungs in order to keep them inflated as the right lung was partially collapsed. Unfortunately, Brynlee’s right diaphragm nerve took another hit and was paralyzed which is what led to her lung not fully inflating. When the team went to remove secretions from her lungs, they had to remove the mask for a short period. Unfortunately, Brynlee was not able to handle this and went into cardiac arrest. They did chest compressions for approximately five minutes and were able to revive her. She ultimately had to be intubated again. This was the scariest time in our lives. We had no idea if Brynlee was going to survive.  During this moment, both Dallas and I wished so desperately we could go back and decide against doing this surgery. 

Brynlee was deteriorating and quickly. Her pulmonary artery pressures were extremely high, and her body was not able to handle it which led to her forming collateral veins (this is the body’s way of trying to get blood to other places with the least resistance). Unfortunately, the pathways her body was forming were not sustainable. The veins were delivering blood to places in her body that it didn’t need which caused her lungs to not have enough blood being delivered.

After a brief discussion with her team, she had a heart cath so they could get more answers/information as to what steps they needed to take to get her out of this downward spiral. (heart caths come with their own risks such as, heart attacks, strokes, major blood clot in the entry site and death). After her suffering cardiac arrest two days prior, we were extremely scared to even be doing this procedure, but we knew we really didn’t have any other choice. Thankfully she came out of the procedure and handled it beautifully. Her team ultimately decided she needed another open-heart surgery. They were going to try and widen her pulmonary arteries as much as possible, fix the arch in her heart and remove the large collateral vein that formed. Another major surgery all within the span of one week. During this time, we also learned that her left diaphragm nerve ran exactly where the surgeon needed to work on her arch. Now we were faced with another open-heart surgery in a short timeframe, but we were incredibly concerned about completely paralyzing her diaphragm. We chose to try – she couldn’t survive the way she was. 

On July 19^th, Brynlee went into surgery for her Glenn repair. A surgery that was supposed to take four hours actually took seven hours. We received the call from the surgeon after surgery and he said she was doing okay but even after all the repairs; she still couldn’t maintain her oxygen saturations. He ended up putting in something called a BT shunt which isn’t ideal. The BT shunt was to help alleviate the pressure in her pulmonary arteries and help deliver oxygen to her lungs. In addition, her blood wasn’t clotting after the operation, so it took some time for them to get that sorted. Once we were able to see her, we were distressed to see that she looked the worse she ever has – she didn’t even look like the same baby. Sadly, nothing really changed from this surgery. Her oxygen saturations were still super low, her pressures were still super high, and she was still on maximum support on the ventilator. We were at a point where we were just so beyond grateful that she even made it out of this surgery. 

Dallas and I finally went home to try and get some rest. We received a call from PCICU at 4:30 a.m. saying they needed to open her breastbone to help alleviate some pressure. Her swelling was quite bad. She powered through that and her pressures in the pulmonary arteries went down a bit as did her swelling. The next few days are a blur. The team had another cath scheduled because even though her pressures were lower with her chest open, she still wasn’t where she needed to be. These few days were chaotic, and everything was dependent upon on what signs she showed. If she showed negative signs, they’d take her in for a cath. If she showed positive signs, they’d close her chest and go from there. She ended up showing better numbers and they decided to close her chest. Unfortunately, once her chest was closed, she spiraled again and was rushed in for a cath. Brynlee is such a warrior, so it was fitting that she handled this cath beautifully. The team informed us that they had coiled off yet another large collateral vein that had formed and her pulmonary arteries were still on the smaller side and her pressures continued to stay high. Over the course of a few days, a few conferences, the team as well as Dallas and I decided she needed to be taken back down to the Norwood anatomy. This was such a gut punch for everyone. The Glenn failed and there was nothing else they could do. 

On August 2^nd, Brynlee underwent her third open-heart surgery in a span of three weeks. The surgery lasted longer than anticipated due to blood clotting issues. But our girl was alive, and she was okay! Dallas and I could finally breathe again. Even though this was the worst-case scenario, our baby girl was still here, fighting and fighting HARD. 

The next several weeks were a blur – with multiple transplant doctors coming in telling us that she was not listed for a transplant yet as her lungs were in horrible shape. They wanted to have genetic testing done to make sure she had no underlying lung diseases. It would take 6-8 weeks before we would get the results. Dallas and I were very nervous about the timeframe as Brynlee was still in very rough shape.  She could not be extubated due to the amount of fluid in her lungs – but we had no choice but to wait on these results. We needed to be sure she would survive a transplant surgery. If there were genetic issues with her lungs, that would change everything with regards to her being eligible for a heart transplant.  

We began noticing that Brynlee’s stomach and liver were VERY enlarged from fluid retention. We were told this is most likely due to Brynlee’s heart being stiff from all the surgeries she endured in a short period of time and the team of doctors wanted to allow Brynlee time to recover. During this time, they were doing PSV trials on the ventilator (where certain settings are turned off to see how she would do breathing more on her own). She was also being weaned from multiple sedation medications. The PSV trials were going well but once Brynlee started to experience withdrawal symptoms from the sedatives, she couldn’t tolerate the trials. So, we stopped weaning and tried to focus on PSV trials. During this time, she also had a procedure done called bronchoscopy as she was most likely going to need a tracheostomy – these tests results came back normal. 

The next day, Brynlee had a routine chest x-ray done and the results were horrible. Her lungs were full of fluid. This is the moment when the cardiologist became worried. She told us that it might be in Brynlee’s best interest to have a heart cath done as there “should” be no reason as to why Brynlee’s lungs looked the way they did, other than something being wrong with her heart. 

On August 29^th, Brynlee had her cath. We received the devastating news that Brynlee’s heart was not functioning well at all. They provided us with two options, we either let her pass peacefully or they could perform surgeries to try and “fix” the issue.  Sadly, the surgery options did not have a good outcome especially for a single ventricle anatomy. 

On August 31^st, Dallas and I made the most heartbreaking decision that any parent must make. We chose to not put Brynlee through any more surgeries. We decided to spend our last week with Brynlee making memories and allowing her to live her last days in peace. It was a truly beautiful week that we will cherish forever.

On September 7^th, Brynlee gained her warrior wings with her mom and dad holding her. This is something no parent should ever have to experience. These words were offered to us, and they really help us cope with our incredible loss… “We always say that we wish we could trade places with our kids and take their pain. That’s exactly what we’re doing by letting her go…we are left with the pain, and she is free”. 

Please join us in celebrating Miss Bryn (aka Bryner Bear, Bryn) on Saturday, September 21, 2024 held at Whitecroft Community Hall, #314-52313 Range Road 232, Sherwood Park AB,  at 11am. We are looking forward to celebrating our Bryner bear with you all. 

Brynlee’s celebration of life will be held at Whitecroft Hall, 314-52313 Range Road 232, Sherwood Park, at 11:00 a.m

To livestream the service, please join the following link https://m.youtube.com/@Pointewestfuneral/streamshttps://m.youtube.com/@Pointewestfuneral/streams