$20,145 CAD raised
·150 donations

help Dallas’s financial situation
Donation protected
I am starting this gofundme on behalf of my brother Dallas, Lena and their 7 month old little girl Brynlee who at only 7 months old has undergone 5 open heart surgeries and went into cardiac arrest, but thankfully they were able to bring her back. As of this week Brynlee has been put on a full heart transplant list. As any parent, their priority is to be next to Brynlee’s side everyday as they wait to see what the future holds for them so this gofundme is to help them with their finances and bills as they wait for Brynlee’s heart transplant and for her to also recover from her last heart surgery.
Lena has written up Brynlee’s full story and everything they have gone through below so you can have an idea what the past 7 months have looked like for them. Thank you to everyone who is able to donate and share their story to help them so they are able to continue to be next to Brynlee’s side.
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 she was 3 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 eat her entire bottle because of the risk of silent aspiration and needed to be fed mostly through an NG tube. We also had extreme difficulty weaning her off of oxygen during this recovery time and there were few answers as to why. For only a week, we were sent home with her on oxygen. 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 evening at home with her until the next night when things took a turn for the worse. Brynlee became extremely agitated and unable to settle no matter what we tried. That 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. The Stollery team ran all the tests that they could at the time and nothing came back as alarming. 3 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 as her chest wires that held her breastbone together, failed to heal and she suffered a minor chest infection due to the equipment failure. After all this, she recovered nicely again from the surgery and thankfully her chest started to heal properly this time.
Unfortunately she started to suffer major feeding intolerances which lead her needing to have yet another operation called Nissen fundoplication where the surgeon wraps part of her stomach around her esophagus to help decrease the amount she threw up as it was becoming a risk of her silently aspirating as well as failure to thrive with weight gain. She also had a g tube placed during this procedure which is a more permanent feeding method as she no longer had interest in eating orally at all due to all her setbacks with surgeries. After this surgery, Brynlee started to thrive. She was able to gain weight and no longer was constantly throwing up all her meals. We were able to bring our baby girl home for a whole month!!
We had a heart catheterization booked for her as she was now needing her next surgery, the Glenn which is done at the 4-6 month mark. We went in early morning for our appointment but again, things took a turn for the worse. While waiting for her heart cath, Brynlee spiked an extremely high fever, was agitated and lethargic. We canceled our cath procedure and were readmitted back into the Stollery. After many tests, it turned out that Brynlee had a UTI that turned into sepsis. She also started having oxygen desaturations again which was our sign she needed her next surgery. We opted out of doing the cath because of the risks given with her having an infection and did the most minimal amount of things that weren’t too invasive for her body. 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 just be that, a baby. Little did we know, this would be the worst surgery yet.
On July 12th, Brynlee had her Glenn procedure. She came out of the surgery alright but instantly was having a hard time with her new blood flow, which can be expected…. so we were trying not to panic yet. They extubated her the next day and she had to wear a BYPAP mask which keeps positive pressure going to her lungs to help keep them inflated as the right lung was partially collapsed. Unfortunately, Brynlee’s right diaphragm nerve took another hit and was paralyzed… again, which is what led to her lung not fully inflating. When the team went to help get secretions out of 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 about 5 minutes and got her back and she ultimately had to be intubated again. This was probably the scariest time in our life. We had no idea if Brynlee was going to make it through this. Both Dallas and I wished so badly in this moment that we could go back in time and had never done this surgery.
Brynlee was deteriorating, fast. Her pulmonary artery pressures were extremely high and her body was not able to handle it which led to her forming collateral veins. It’s the bodies way of trying to get blood to other places without having to take a path that has a strong resistance. Unfortunately, these 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 ended up having a heart cath to give them more answers/information as to what steps they needed to take to get her out of this downward spiral. Heart caths come with risks themselves such as, heart attacks, strokes, major blood clot in the entry site and death. After the events that had taken place 2 days prior to this, we were extremely scared to even be doing this procedure but we knew we really didn’t have any 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 her arch in her heart and remove the big collateral vein that formed. Another major surgery all within the span of one week. And it doesn’t even stop there. We learnt that where the surgeon needed to work on her arch in her heart, is where her left diaphragm nerve ran. Now we were not only talking about the risk of doing this open heart surgery and it not working or fixing anything or her even making it through it but also, completely paralyzing her diaphragm. Ultimately, we had to try. She couldn’t stay the way she was.
On July 19th, Brynlee went into for her Glenn repair. A surgery that was supposed to take 4hrs, took 7. We got the call from the surgeon and he said she was doing alright 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. It was basically to help alleviate the pressure in her pulmonary arteries and help deliver oxygen to her lungs. On top of that, her blood wasn’t clotting after the operation so it took some time for them to get that sorted. Once we saw her, she looked the worse she ever did. Honestly, she didn’t even look like the same baby. Nothing really changed from this surgery. Her oxygen saturations were still super low, her pressures were still super high and she was still on max support on the ventilator. Truthfully, 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 sleep. We got a call from PCICU at 4:30am saying they needed to open her breastbone a bit 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 honestly 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 a bit chaotic and everything was kind of up in there air, depending on what signs she showed. If she showed the “bad” signs, they’d take her in for a cath, if she showed better signs, they’d close her chest and go from there. She ended up showing better numbers and they decided to close her chest. Once they did that, everything spiralled again and she got rushed in for a cath. Shes such a warrior so of course she handled this cath beautifully. They informed us that they had coiled off yet another collateral vein that had formed during this procedure and her pulmonary arteries were still on the smaller side even with all the patch work the surgeon had done 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 2nd, Brynlee underwent her third open heart surgery in a span of 3 weeks. The surgery lasted a bit longer than anticipated again due to blood clotting issues but she was alive, she was ok. Dallas and I could finally breathe again. Even though this was the worst case scenario, our baby girl was still here, fighting… HARD. So, that brings us to now. Brynlee has been confirmed to have bilateral diplraphm paralysis which means she’s unable to breathe on her own at this time. There are talks of her needing a tracheotomy if she’s unable to be taken off the ventilator. She’s also been listed for a heart transplant as the three surgeries are no longer an option for her. The Norwood anatomy is not a sustainable anatomy and will take a tole on her heart as she grows.
Dallas has been off majority of the time that Brynlee has been alive (7 months). His work has been incredibly generous and understanding of our circumstances with our daughter but unfortunately, time has run out and he will be needing apply for long term disability (which is in the works). We’ve fought long and hard to not only stay afloat mentally but also financially. With Brynlee’s hospital stay not even close to being over, we’re generously asking for some help. This was our LAST resort and we appreciate every single one of you, wholeheartedly.
Donations
Organizer and beneficiary
Amber Danylyshyn
Organizer
Fort Saskatchewan, AB
Dallas Danylyshyn
Beneficiary