"Excellent Care, Kind Words, & Loving Support . . . " Teen Fights to Keep Her Beating Heart

It was just another swim practice, until Maddy was rushed to Primary Children’s in an ambulance. How many teenagers have you heard of having a heart attack?

Madddywith-Doc

Written by Sarah, Maddy's Mom

It was supposed to be just another swim practice. The next thing we knew, Maddy was rushed to Primary Children’s Hospital in an ambulance. How many teenagers have you heard of who have suffered a heart attack?

To our knowledge, Maddy was perfectly healthy, but we soon found out that she had an undiagnosed congenital heart defect that would threaten her life. By the time the ambulance arrived, her lungs were full of water and blood and she was mostly unconscious. Luckily, her heart never completely stopped until she reached the emergency room.

Once she was in the ER, exceptional trauma physicians and nurses had to perform CPR for over an hour to bring Maddy back to consciousness. The doctors were unable to diagnose the problem immediately. They decided to put Maddy on an ECMO machine to keep her heart and lungs functioning.

Discovering the Problem

Once Maddy was relatively stable, the doctors rushed to get a CT scan. Everyone was worried that after so much time without her heart beating on its own that she would have significant brain damage. Miraculously, the CT scan showed that her brain had no signs of damage.

It wasn't until Maddy was in the Cath Lab that they discovered the cause of the problem. Maddy’s left coronary artery came off of her heart in the wrong place. The coronary artery become pinched between the aorta and the pulmonary artery at swim practice, which caused a heart attack.

After resting for three days, the doctors were wanted to try and take Maddy off the ECMO machine. We were hoping that her heart would have recovered enough to beat on its own. They called the attempt off because there was concern that she might have had a stroke. Prior to this, Maddy would occasionally open her eyes or nod in response to people talking to her. On this day, however, even deep tissue attempts to rouse or get any response weren’t working. They reduced her medication, which had been sedating and paralyzing her. They told us that if she didn’t wake up, it meant she had probably suffered a stroke. We watched and waited. We were finally relieved when Maddy woke up!

Many Days at Primary Children's

The next day, the doctors successfully removed the ECMO machine only to find that there wasn't any blood going to her leg. They only had an hour to save it. They called in a vascular surgeon from the University of Utah. He came as quickly as possible despite being in another surgery. He was able to successfully restore the blood flow to her leg.

The surprises didn’t end there. As Maddy was coming back from this surgery, her heart started to fail again. The attempts to help her heart pump stronger pinched her coronary artery again, so they rushed her back into surgery to fix the original defect. Though the surgeon was able to fix the problem, Maddy’s heart was still not strong enough to beat on its own. He put her back on the ECMO machine. The hope was, after a few days, her heart would be strong enough to beat without the machine.

The night before they planned to remove ECMO, Maddy’s heart stopped working almost entirely. At this point, several doctors from Primary Children’s Hospital and the U of U met to find a new solution. They found an Left Ventricular Assist Device (LVAD) that would fit the size of Maddy’s heart and help circulate blood. This would give us more time to see if her heart would heal or if she would need a heart transplant.

To our delight, the operation to implant the LVAD and remove the ECMO was successful. Over the next few days they were able to carefully wake Maddy up. She stayed on the LVAD in the Cardiac ICU for three weeks. Maddy loved the CICU! She made friends with all of her nurses and doctors. Her days were filled with art therapy, music therapy, physical therapy, occupational therapy, psychological therapy, animal therapy, speech therapy, child life and many other fun activities.

Maddy's Heart Recovers

Three weeks after Maddy had to have an emergency surgery due to blood clots inside her chest, doctors decided to take Maddy off the LVAD. The back part of Maddy’s heart tissue had died, but the echocardiograms and other tests showed that it should still be able to beat on its own. The surgery proved successful, and her heart has been beating on its own ever since! After four open heart surgeries, nine total surgeries, and nine and a half weeks of being closely monitored in the Cardiac ICU and Children's Surgical Unit, Maddy finally came home! We are grateful to have had the opportunity to thank many people who cared for Maddy in her time at Primary Children’s Hospital, but we know there are many who we missed. Thank you to everyone for the excellent care, kind words, and loving support!