Heather's Story: honoring adler & raising awareness for congenital heart defects



Nothing could prepare Heather Nichols when she learned at an anatomy scan that her son Adler would be born with a congenital heart defect (CHD). Soon after Adler’s birth, her family, husband Matt and son Soren, age 3 at the time, went through one of the most challenging experiences of their lives. Throughout it all - almost a year - the compassion, care and love the Nichols’ received by the staff at Helen DeVos Hospital in Grand Rapids, Michigan would leave a profound mark on Heather and her family.

 After Adler's passing, Heather contacted Magnetic Me to buy some outfits to donate to other families in the Cardiac ICU at Helen DeVos Children's Hospital in Adler's memory. Her story touched us all so deeply that, together, we donated a year's supply of footies to the hospital's Cardiovascular intensive care unit (CICU) in honor of Adler. As many believe, from sorrow comes great hope and with Heather's dedication to raising awareness, she hopes her son's legacy will inspire more research for heart diseases. More on our donation to Helen DeVos Childrens Hospital to come. 

 Heather shares more about her journey with Magnetic Me… 

 

Can you share some of your favorite memories of Adler?

Oh, there are so many great memories of Adler! Adler was rarely able to see outside the hospital walls or our house. When we made conscious and safe efforts to get outside, it would ignite a fire inside him. He always knew when we were leaving the hospital, because he would smile from ear to ear and his eyes would light up with wonder. Adler loved being free to explore; he'd always pick on his big brother and comfort me and his Daddy, he was just the best kid ever. 

 

As you and your family continue to honor Adler, in what ways are you planning to continue his legacy?

 Adler continues to bring our family and friends closer together when we gather to remember him. During a dark period of isolation with COVID and Adler's diagnosis, protecting our medically fragile child meant we were cut off from loved ones. In 2021, we were able to participate in a CHD walk fundraiser together, decorate a Christmas tree in his honor, and gather to remember all of the beautiful things about him. We've been leaning on each as we navigate our grief.

 Approximately one in 100 babies are born with CHD; we were shocked to learn how common it really is. CHD is life altering for the child, there is no cure, and research is seriously underfunded due to lack of public knowledge. Our hope is to raise awareness about congenital heart disease and just how underfunded it is. Children born with CHD and their families struggling to help them need our help to shine light on the cause and fight for a cure. 

 I am truly excited for our partnership with Magnetic Me and what we have planned together this year to help raise awareness for CHD.

 

How did you first hear of Magnetic Me?

 We found Magnetic Me at a local baby boutique when I was pregnant with my oldest son Soren almost five years ago. And, as soon as it became safe for us to dress Adler during our admissions, he always wore Magnetic Me footies. We chose Magnetic Me because the magnetic fasteners made it easy for doctors and nurses to assess him quickly. And by the convenience it granted the medical team, they were the best hospital-approved option for us.

On top of that, the fabric was soft and the prints made us happy. Getting him dressed helped me regain my sense of being his Mama and being able to care for him. In "regular clothes," he looked like my sweet baby boy and not a hospital patient.

 

What is a message you have for our audience and parents dealing with congenital heart defects and disease?

 I want other CHD parents to know how incredible they are and that they are the best advocate and caretaker for their child. There are other parents out there who know what you are going through and want to support and connect with you. Don't be afraid to ask for help when you need it and tell your support system exactly how they can help you. You're an amazing parent and deserve the help!

I recommend Conquering CHD, the American Heart Association, and the Children's Heart Foundation as resources for other CHD parents. 

 

Name three things that you brought from home that made life in the hospital a little easier. Do you have any tips for parents spending time in the CICU? 

 Since we were frequent flyers I always had a bag packed and ready to go. Our essentials were Magnetic Me jammies (obviously), big swaddles from home (hospital swaddles are tiny), and our Hatch sound machine was so helpful to soothe Adler in a very uncomfortable environment. For parents, if you can manage, a blanket and pillow from home.

 My advice: Your concerns, questions, and observations about your child are valid, don't ever be afraid to advocate for them. You are not an inconvenience, you are worthy of their time, and you know your baby best! The people that love you want to be there for you, but often don’t know how and where to start. Tell them how they can help get you through this excruciating time in your life.



   

 

 

 

 

 

 

 

 

 

You can connect with Heather on Instagram where she continues to raise awareness of CHD.