A Note from Madison's Mommy

I am a heart mom.

I am a first time mom.

I am a new heart angel mom.

I am and will always be the proud mom to my first beautiful baby girl, Madison Rose. As many of you know, sadly Madison passed away suddenly on September 8, 2016 from a congenital heart defect called Hypoplastic Right Heart Syndrome.

My husband, Matt, and I learned of Madison's heart condition at my 20-week ultrasound and suddenly our world was changed forever. We continued to give Madison the best fighting chance. We would not give up on her and never did. The doctors were very hopeful and remained positive throughout the rest of my pregnancy. Madison was born on June 17, 2016 and immediately was taken to the Neonatal Intensive Care Unit (the “NICU”), where sadly she never left. Madison had one cath procedure a few days after birth, one open heart surgery within the first two weeks of her life, in addition to countless other procedures, PICC lines, IVs, arterial lines, echocardiograms, EKGs, blood transfusions and daily bloodwork. I have watched my own daughter endure what seemed to be endless pokes and prods while fighting for her life. I sat in the NICU every day and watched Madison undergo more in those 2 1/2 months than most people will ever experience in their lifetime. A few weeks after her open heart surgery, Madison's heart function decreased and it was recommended that we list her for a heart transplant. We held our baby girl down as they poked her for blood daily and other tests. It broke my heart to hear her cry in pain but we continued to fight together and never gave up hope. Many people who visited Madison or saw pictures said “she looks so good;” however, that is one the main misconceptions of CHD. Many of these children suffering can sometimes look perfectly fine upon first glance, however may be in severe heart failure, sometimes not even showing any clinical or visible signs. Devastatingly, Madison did not receive her new heart in time. We watched helplessly as our first baby girl fought for her life, suffered, and died.

Time and time again I watched as others babies coded in the NICU. I sat there crying in disbelief, so angry at the world, just hoping and praying that would never be us. This then became my reality and Madison was gone so quickly. I held my baby's cold, heavy, and tired body as I said goodbye. The sounds and images of the NICU, of Madison suffering, and of the worst night of my life, I can never forget. They replay over and over in my mind like a terrible dream that will never end.

The idea of "normal" and life as a "first time mom" was gone. I had so very little control during Madison's short life. I had to ask to touch my baby. I had to ask to hold my baby, and there were many days that I was not able to do so. I am now living my new "normal". Life after loss, just surviving and trying to find my new path in life.

I try to channel that pain and suffering and turn it into something positive. That is why I am now actively a part of many heart mom groups, family support, CHD community, grieving mother groups online and partnering with various heart organizations. I am doing and will continue to do everything in my power to help others going through this same experience. I continue to follow other heart warriors' journeys. It is a sad and scary world that many do not know about, until it affects you or a loved one. There continues to be too many lives lost too soon. More CHD funding and awareness is desperately needed.

Everyday continues to be a struggle but I get up and keep moving forward. I find myself grasping at strings trying to do everything and anything to keep Madison's memory alive. We created awareness for CHD starting when Madison was born, throughout her journey in the NICU, and will continue to do so. Over the summer, many local Hoboken businesses hosted fundraisers in Madison's honor and helped share our GoFundMe page. Our friend had Madison Strong bracelets made. News outlets and online websites and blogs provided us enormous help in sharing Madison’s story. This past fall we created our Madison Strong Team, had t-shirts and signs made and participated in our first heart walk, The New York Congenital Heart Walk, raising money and awareness for CHD. We finished as both one of the top 10 teams and top 10 participants for fundraising. Madison was featured in the 2017 Children's Heart Foundation CHD Awareness Calendar and also recently spotlighted on the CHF-NY Chapter social media pages as a Weekly Heart Hero. We just hosted our Ride for Madison & CHD Awareness class at Cyclebar and look forward to our future fundraising efforts. We are co-chairing Hayden's Heart Foundation's “Heart Strong” Golf Tournament, named to honor Hayden and Madison, this June in New Jersey and will be participating in another walk this year. And now, I am proud to worth with Little Hoboken to help with their community outreach and work with local charities.

This past year I have learned about how to be a heart mom. I have learned and am still learning about the CHD community, this whole other world of babies, kids and adults fighting this terrible disease in which there is currently no cure. I am learning about the grieving process and child loss. I know that my grief will never end but it will grow and change. I am forever changed. I am no longer the same person I once was. Child loss is not something that you simply "just get over" but I will live with and carry with me for the rest of my life. I have read that it is so much harder to teach the world about your child than to teach your child about the world. That is my new job now and my new passion in life. I will continue to support the CHD community, support both warriors and angel families, create CHD Awareness, and honor Madison. I hope you all continue to come along with me on this journey!

I am eternally grateful for everyone who shared our story, contributed to our Miracles for Madison GoFundMe page and supported us in unimaginable ways over this past year. To say that this past year has been the most difficult and challenging is an understatement. I have learned about the power of indescribable strength and love. I have learned that we, as individuals and as a community, are stronger than we think. I have learned to never take anything or anyone for granted. Life is too short. Madison inspires me every day to fight to be just as strong and courageous as she was, and my hope is that she can be an inspiration for all. I hope to inspire and help others just as others have helped me throughout this journey that is never ending. I miss Madison so much but carry her with me every day in my heart. I am forever Madison Strong!

Stephanie Cohen is a local mom who works every day to honor the memory of her baby girl Madison. With her husband Matt, and labradoodle Willow, this family is the shining example of love and strength. You may know Stephanie from her main gig at Local Barre, but you will definitely get to know her as the face of Little Hoboken's charity and community outreach.

To reach Stephanie, or to tell us about a charity or family in need, email