My Son’s Health Crisis Inspired Me to Help Other Kids

This month, we’ve invited moms who inspire us to share their stories with Momtastic for our Super Mom Series. Susan Aucoin is a mom of three kids, an entrepreneur, and a philanthropist. In February 2013 she created the Henry Aucoin Foundation in honor of her son Henry, who was born with a congenital heart defect, but survived thanks to open heart surgery shortly after his birth. Susan's goal is to raise money for the American Heart Association and to raise money through the Henry's Hearts gala to benefit families in need who are traveling to New Orleans (the Aucoin's hometown) for pediatric cardiac care.  

When I was 29 weeks pregnant, I was diagnosed with twin to twin transfusion syndrome, a rare disease of the placenta that only affects identical twin pregnancies. My doctor sent me to a specialist for further testing, and that doctor discovered a congenital heart defect (transposition of the great vessels) in one of my twins; the baby would need open heart surgery soon after he was born.

I left the specialist's office with my husband Dwayne, totally distraught. As soon as I got into the car I called a close friend who is a pediatric specialist and asked her "What is transposition of the great vessels?" Her response was "Oh God, not one of the twins!"  I immediately felt numb and nauseated.

We were advised to interview pediatric CT surgeons at the local hospitals and decide where Dwayne and I wanted the baby to have surgery. Interview them? I didn't even know what to ask them. But both my friend and my ob-gyn guided us and we pulled ourselves together. We interviewed doctors at three different hospitals, and made lists of pros and cons. We made a decision and went with it. Was it the right decision? I still ask myself that question today. But then I remind myself that Henry is still here so it was indeed the right decision.

On April 27, 2009, my twin sons Henry and Benjamin were born. Henry, the baby with the heart defect, came out first and was quickly taken to the Neonatal Intensive Care Unit. Neither Dwayne nor I were able to hold him. Or touch him. Just look at him. Later that day he was transported to the NICU at Children's Hospital New Orleans, where he would later have his surgery.

Henry’s first open heart surgery took place on May 15. We were terrified as he was whisked away to surgery. Henry was the smallest baby his surgeons had ever operated on. He only weighed four and a half pounds and his heart was about the size of a quarter. The doctors prepared us for the worst. They told us to pray for a miracle. They told us that IF Henry survived the surgery he would need a machine that would breathe for him and a machine that would circulate and oxygenate his blood for him (most commonly called ECMO).

Thirteen hours later, despite the grim warnings, Henry's surgery was successful. He needed oxygen but he never required ECMO. No one could explain it. I'm not sure the doctors could even understand how or why Henry did so much better than they had expected. But I smiled and thanked his angels above.

I can still remember the first few days after I was home from the hospital. I had gifts and other things stacked in Henry's crib. People offered to wash them and put them away but I refused.  Finally my husband asked me why, and I told him I was not ready yet. I needed Henry's things to be easily removed should something terrible happen. And I began to cry.

That night I had a dream. I was shopping at a funeral home with my husband's deceased father and deceased grandfather (strange, I know). The three of us were looking around. I stopped at an infant coffin covered in cob webs and looked at my father in law. He shook his head and said "Don't worry. You won't be needing that." Then he smiled.

I woke up the next morning with a great sense of peace. I went into the nursery to check on Benjamin and saw Henry's crib. I took everything out and washed his sheets and all of the gifts.  From that moment on, I knew everything would work out. And it absolutely did. Henry’s angels above took the very best care of him and gave him the strength he needed to pull through.

Two months after Henry's first surgery, Dwayne and I were finally able to hold Henry for the first time. Soon after that he was able to meet his big sister Emily. As a parent, this was one of the happiest moments of my life. She was just 2 1/2 and had such a hard time understanding why only one of her brothers could come home from the hospital.

On July 12, Henry was finally released from the Cardiac Intensive Care Unit and he was able to be reunited with his twin Benjamin after 77 days apart. He was able to go home the next day. It was a long and rocky road but Henry did much better than anyone anticipated. He was discharged on minimal medication and taken off of all medication soon thereafter.

Helping Other Pediatric Heart Patients

Just before Henry was discharged from the hospital, a childhood friend of mine asked Dwayne and me to participate in the New Orleans Heart Walk to help bring awareness to pediatric heart patients. We created Team Henry, in honor of our son. Since then Team Henry has participated in the New Orleans Heart Walk benefiting the American Heart Association every November. The first year we raised just over $4,300 and this past November we raised just under $10,000.

But I still wanted to do more. Over dinner one night with another childhood friend I came up with a plan to create a foundation to help other pediatric heart patients and their families traveling to New Orleans for treatment. I came home to tell Dwayne and he thought I had lost my mind. He was hesitant not of the project itself, but of the time and money it would take. A friend and I own a monogram business called Thread of Louisiana. I also work part-time for our pediatricians at Collins Pediatrics, not to mention my largest, most important (and unpaid) job of wife and mom of three. But Dwayne went along with it. He knew I was determined.

In February 2013, we established the Henry Aucoin Foundation, in honor of our son. Our goal is to raise money for the American Heart Association through Team Henry and to raise funds through the Henry's Hearts gala to help other families with the cost of surgery, procedures, medications, and medical equipment. We also hope to one day have a transportation van and establish Henry's House, where families can stay while their children are being treated.

I’m incredibly excited about the opportunity to help the many infants and children who need the kind of care that Henry received. I believe Henry was sent to us for a reason and a purpose; he’s given us the will, determination, and desire to help others like him and other families like ours.

Henry has taught us so very much in his short life. He is a constant reminder to be grateful for what we have.  In the midst of the screaming, fighting, playing — all of it — Dwayne and I are reminded of just how lucky we are to have all three kids home with us. Because our life today would be so very different had Henry not made it through his ordeal. Henry will be 5 this April. He is my daily reminder that miracles do exist.