My Story
Last year Brandt and Nic Raised over $400 dollars for Feed my starving children, when we played every Hero in Marvel Champions. So this year when Brandt asked Nic to help play through every Villian, Nic recommended donations be made to CHD, because it is a personal issue to Nic.
Nic’s second daughter was born with Congenital Heart Defects (CHDs) and Heterotaxy Syndrome. She was named Laura after the most ferocious fighter Marvel Character he and his wife could think of, Laura Kenney, AKA X-23. She passed away at 8 months old and defied many odds to live as long and well as she did. Nic and his wife feel very fortunate to have her cared for at Boston Children’s Hospital – their staff are among the leading in the world for CHD’s (as well as Heterotaxy Syndrome).
Having a child with CHDs opened Nic’s and his family’s eyes to how common and under researched CHDs are. According to the CDC website, heart defects are the most common types of birth defects affect nearly 1% (or 40,000) births a year in the United States. Additionally, about 1 in 4 babies with a heart defect have a critical heart defect.
Heart defects cannot be cured, only treated. With the advancement of technology, the care and quality of life is improving for CHD patients but further research and advancements are needed. Nic choose this organization in memory of his daughter Laura.
Read more about Laura’s story below:
Our journey started at the gender ultrasound five days before Christmas. Two days later a level 2 ultrasound confirmed issues with the heart. Two days before New Years Eve we were told our child would have a 30% chance of survival through the first heart surgery, requiring three. Four very long days later we were at Boston Children’s (BCH). There we were given hope, best guess of 70% survival through first surgery if worst case scenario (we were). We were told our child had: single ventricle, unbalanced CAVC, DORV, Arch obstruction/coarctation, TAPVC Supracardiac, Dextrocardia and Heterotaxy Syndrome. Her TAPVC was mostly obstructed backing blood into the lungs while she was in the womb causing her to be born with sick lungs which ultimately was the leading cause for her death at 8 months old.
We decided to give our daughter the best chance at survival we could. We were induced at 39 weeks attached to BCH. She had her first open heart surgery at 4.5 hours old. We found out much later that her surgeon did not think she was going to make it home. It took a couple tries to close her chest and there were concerns about fluid output in her chest tubes but Laura was, and is, a warrior and defied the odds. We held her for the first time at a little over four weeks old. We were in the hospital a total of 9.5 weeks after she was born– last five weeks mostly because of her lungs. She was home a total of 13 weeks which included 6 days in our local hospital from an ER visit and 6 days in BCH due to a cath procedure. She had a GJ tube, was on 9 different meds a day, had atleast one dr visit every week, a visit nurse twice a week, and various specialist appointments. October 14th an ER visit led to transfer to Boston. Her oxygen sats had dropped suddenly. A week later and she had her second open heart surgery - entering into it sick. This hospital stay was 15 and a half weeks and our last one. She was on ecmo (life support) two times – 1st almost two weeks, 2nd a day(emergency). They performed a tracheostomy in hopes it would help her come home sooner.
On 1/28/19 we were told we both needed to be in Boston. Drs explained situation was grave, she was not bouncing back from her desats this time. We had a day and a half of cuddles and loving moments. On 1/30/19 at 1209 AM she passed peacefully in our arms.
