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Stephanie - Atrial Septal Defect

by Kathleen Sullivan

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April 2002. Imagine a fun family vacation in the desert with your kids. Your 5 year old comes down with an ear infection so you find an urgent care and drop in. Everything is fine, right? The doctor tells you that in addition to the ear infection, your child has a heart murmur. Nobody had ever heard anything in my daughter Stephanie’s heart, she had been to the doctor many times, so we discounted the diagnosis and even argued with the doctor about it. She strongly encouraged us to see our pediatrician when we got home. We talked about what the doctor had said and although we thought she was wrong, we decided to get an appointment just in case. They didn’t hear anything at all in her heart and checked back through the last five years of records, no abnormalities at all had ever been noted in Stephanie’s health.. We were relieved but the insistence of that urgent care doctor in Las Vegas had us asking our pediatrician for a referral to a cardiologist. It would turn out out that God was whispering in our ears.

6 weeks later on the day of the appointment we more concerned with what to make for dinner as we sat in the waiting room than about what they might find.  They did the EKG on her then took us to another room for her Echocardiogram. The man running the echo machine was passionate about his work. He told us all about the machine, all about what he was seeing and was very animated in showing us everything. Then, in the middle of the exam he stopped talking to us and furiously started typing. That was when I think my breathing changed, my heart started to pound. His demeanor changed so quickly. We kept asking him questions but he would just answer “The doctor will come to talk to you when I’m done”. When the doctor arrived, he said to us “Let’s have your older daughter take Stephanie out to the playroom so we can talk”. That moment was when our lives changed forever.

He explained that Stephanie had a congenital heart defect called Atrial Septal Defect, or ASD. The two upper chambers of her heart were supposed to be separated by a wall but she had a very large hole in that wall, making it nearly three chambers instead of four. Most kids who have an ASD are diagnosed as babies. With Stephanie, the hole was so large that the blood going through it didn’t make any noise, which is why nobody had ever heard it before. Her poor little heart was enlarged and was being damaged. He explained that we would need to get it repaired very soon. The outside edge for a successful repair was at about the age of 5 and she was already 5-1/2.

He said we had some time to make decisions about the repair and we had a couple choices for how to proceed. One was a very new procedure in which a device was inserted through the groin and then expanded in the hole to seal it. It was non-invasive and the medical community was very excited about the potential. The problem was, it had only had FDA approval for 5 months and had never been done on one as young or as small as Stephanie. Clinical trial data only went out 10 years so there were still a lot of unknowns. The other option was open-heart bypass surgery, which had been successfully done for over 20 years and would be a permanent fix. The disadvantage to this was how risky and invasive it is.

We were shocked and devastated. Many of the following nights after she fell asleep I would lay next to her and lay my head on her chest and just listen to her heartbeat. It sounded just fine to me. It filled me with both love and terror. It was hard not to let fear take over. I cried all the time. After talking to a lot of experts and doing as much research as we could do, we decided to go with the open-heart surgery. Dr. Jack Leonard was our surgeon and he performed the repair on July 8, 2002. When they wheeled her away she looked so small in that big bed. She was clutching her stuffed animal and singing the Star Spangled Banner, her favorite song. She was in there for such a long time. When they told us she was on the bypass machine I fell apart. I felt like everything that made my daughter alive was now on hold, run by machines.  Hours later, when Dr Leonard appeared at the door he told us that the hole was much larger than any of the initial tests showed.  To put in in perspective, a child’s heart is about the size of their fist. Imagine the fist of a 5 year old. Now place a 50 cent piece on that fist. That is what he found when he went in to do the repair, but he was able to successfully patch the heart. I responded as any reasonable person would, I nearly knocked him over hugging him.

We stepped into the recovery room with a sense of relief. She looked so vulnerable with all the tubes and machines hooked up to her. She was groggy but recognized us. We were on each side of her bed, holding her hands and talking to her when all of a sudden her eyes rolled up in her head and all the alarms on the machines went off. She had stopped breathing. They pulled us out of the room  as Doctors and nurses were streaming in, shouting instructions at each other.  I couldn’t stop looking at her, they were trying to make her breathe but she wasn’t responding. I was watching Stephanie die.

They took us away. What seemed like an eternity later, but was actually about 15 minutes, they told us “she’s alive”. To revive her they had use three reversals to strip the drugs from her system. She was 1 hour out of open-heart surgery with absolutely no drugs in her system, no painkillers, sedatives, anything.

When they opened the door to the hallway I could hear her screaming all the way down the hall but it was the best sound in the world. We got to her side and she was in so much pain, her chin was quivering and she kept screaming “my heart hurts, oh my God, my heart hurts”.

She told me a few months later that God had told her she couldn’t stay and play in Heaven and He asked the angels to hold her hand and bring her back to us.

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She has passed every single heart checkup with flying colors.  She grew 6 inches in that first year after the surgery. At about the age of 11 her body grew to about the right size for her enlarged heart. She’s a normal, healthy young woman who carries a giant scar of courage on her chest. I have to keep reminding myself that she wouldn’t even have lived to this age had we not found the defect. In 2011 we had the privilege of watching her win the U.S. National Championship on her Arabian Horse in Dressage, followed by many more wins in the years after that. She has dreams of competing on the U.S. Olympic team and thanks to where cardiac research and surgery has advanced to, her dream is a possibility. She is a NORMAL, HEALTHY adult.

That time in our lives forever changed us. It changed how we operate as a family, it changed my appreciation for parenthood and for the struggles that anyone with a sick child goes through. It was a time of complete isolation and fear. I founded chapter #393 of Mended Hearts of Spokane so that no other parent has to go through this alone. It’s been gratifying and humbling to work with these patients, their families and be the custodian of their stories.

Kathleen Sullivan.


To see Stephanie's story, click on the video below