Bree Zwolak - A tiny superhero

Meet Bree. My beautiful, strong, brave niece. She is the daughter of my brother Chris and his wife Lindsey, and this is their story.

 

Chris and Lindsey tried for years to get pregnant and after multiple negative pregnancy tests, doctors’ appointments, and surgeries, they were referred to a fertility clinic at the end of 2019 to begin the IVF process. Unfortunately, it was a failed cycle. They were then referred to a naturopath before the next round of IVF and after some testing it was recommended that Lindsey go on a strict gluten, dairy, caffeine, and alcohol-free diet along with no processed foods. After three months on this new diet, they got the phone call that their next round of IVF was cancelled due to COVID. They didn’t know how much more disappointment they could handle emotionally.

 

However, that all changed on May 1, 2020, and they were finally blessed with some positive news. They were pregnant!!

 

The next few months were very typical until the 20-week anatomy scan. They couldn’t get all the heart pictures at the scan, and after two additional scans they were given the news that something was wrong. They diagnosed Bree with Ebstein Anomaly, a rare heart defect where one of the valves is in the wrong position and the flaps are malformed. At this point she was referred to Mac and was followed by a high-risk OB. She was monitored regularly with weekly ultrasounds, and they were told that there could be more going on with Bree, but they wouldn’t know for sure until she was born.

 

Unfortunately, on November 23rd Lindsey was admitted to McMaster because of abnormal dopplers. They monitored her with non-stress tests and ultrasounds where she had to do daily fasting. After a week of monitoring, they told Chris and Lindsey that she wouldn’t make it to the next milestone and the decision was made to schedule a c-section at just over 34 weeks. On December 1, 2020, their baby girl was born, weighing just over 3 pounds. Next was that moment every mama to be dreams about. The first hold. Little did Lindsey know it would be 13 days before she would have this moment, and even longer for Chris.

 

When Bree was born, they performed a scope on her immediately as she wasn’t breathing. It was there that they confirmed an issue with her esophagus. It was either blocked or not attached to her stomach. Therefore, she was transferred to Sick Kids immediately and underwent her first surgery at three days old. This was the beginning of a long and emotional seven months. Bree had a total of six surgeries by the time she was seven months old.

- TEF, EA and vascular ring (for her esophagus) at 3 days old

- 2 choanal atresia surgeries (for nasal blockages) at 3 weeks and 1.5 months

- Supraglottoplasty (for her airway) at 3 months

- G-tube insertion at 3.5 months

- Tracheostomy at 7 months

Along with these surgeries came additional tests where she was diagnosed with coloboma in both eyes, which is missing tissue in or around the eye which causes mild to severe vision problems. Unfortunately, because she is so young, they won’t know what her vision is until she is older. They also did a CT of her ears as she was born with a malformed ear, and they were told she would likely be deaf. With these medical issues, and a genetic test, Bree was officially diagnosed with CHARGE syndrome at one month old. “CHARGE syndrome refers to a specific set of birth defects, medical problems, and developmental issues. It affects 1 in about 10,000 births.” (www.chargesyndrome.org)

 

Bree was transferred back to McMaster on January 19, 2021. She was recovering great from all of her surgeries, but always seemed to have trouble breathing. She would do great for a little while and then she would get a lot worse. The doctors brought up the option of a tracheostomy but for Chris and Lindsey it was just too soon. They felt there was more to be done before they made that important decision. After months of going back and forth between oxygen and high flow, and multiple scopes they finally did a CT scan which showed an extremely narrow airway. It was at that time they made the decision for the tracheostomy. This was lifechanging for her and she has been thriving ever since. She really is the happiest little baby!

 

Now comes the good news. The light at the end of the tunnel. BREE IS COMING HOME!!! This is the day Chris and Lindsey sometimes thought would never come. The day they have thought about since the day she was born. September 28, 2021 will be the day they get to bring their beautiful baby girl home.

To help with the transition home, the McMaster NICU has a program called Care by Parent. It was with this program that Chris and Lindsey were able to spend two nights alone with Bree in the hospital with the reassurance that the nursing staff were close by. It was during these two nights where they were able to have some normalcy and just be their little family of three. Bree saw her mommy and daddy for the first time without masks. They got to lay and play with her on the bed, and they got their first (unmasked) family photo…at almost 10 months old. These little things, I know I unintentionally take for granted daily.

 

On top of all the emotional stress Chris and Lindsey went through, they did it during the pandemic. They couldn’t visit with Bree together and at Sick Kids only one person could be in the hospital at a time. Each of them would spend hours in the parking lot at Sick Kids waiting for the other. Stores and restaurants were closed and there was nowhere to go. I can’t even imagine the toll that took on them on top of everything else.

 

Now I would like to let you know why I am doing this go fund me and what your money will be used for. Because of her tracheostomy, Bree needs 24hr care, eyes on her at all times! Because of this they have had to make the tough decision for one of them to leave their job to care Bree once Lindsey’s maternity leave ends. Financially they both can’t work and pay for care for her. There is also a lot of equipment and supplies required for a tracheostomy and unfortunately the government only covers a portion. The money raised will help pay for the monthly supplies as well as take away a little of the financial burden so they will be able to still plan for her future and ensure her medical needs are always taken care of.

 

Any donation is more than appreciated and please know that your money is going to help this beautiful girl live the best life.

 

Life may not always be easy for her, but I have no doubt she’s going to do big things in this world.

 

Thank you from the bottom of my heart, Bree’s loving Auntie.

 

Melissa