by Keri Henshaw
Meagan’s Mom
Meagan was born November 21, 2013. There were no problems during my pregnancy or cesarean section. We spent four days at St. Mark’s hospital and left with a clean bill of health. All the congenital heart tests performed after birth were normal, as were the ultrasounds.
A Mom’s Nightmare
Eight days after Meagan was born, the day after Thanksgiving 2013, I looked at Meagan while she was sleeping and noticed she looked a little blue around the mouth. I called my pediatrician who told me to bring her to the office for examination. Upon arriving, they took Meagan’s temperature and it registered 96 degrees. They listened to her heart and heard what they refer to as a “gallop.” They immediately called an ambulance to take her to Primary Children’s Hospital.
We arrived in the ER, praying it was just a virus or something minor. After many tests and a four-hour echocardiogram, we were notified Meagan had two holes in her heart–a tricuspid valve defect and a problem with her patent ductus, (a duct that should close about a week after birth). They told us it would be okay, that it may require surgery but nothing too serious. As a first-time mother, hearing my baby was not healthy was a nightmare, but I still believed everything would be fine.
The News Worsens
They moved Meagan to the Cardiac Intensive Care Unit (CICU). There, the news just kept getting worse. They said Meagan’s kidneys and liver had completely shut down, and if they didn’t regenerate there is nothing more they could do, as they can’t perform heart surgery when the other organs aren’t functioning. They explained the echocardiogram done in the ER would need to be redone by a specialist, at which point they discovered Meagan had a coarctation of her aorta (narrowing in her main artery) in addition to the two holes in her heart–one between the left and right atrium, and one between the left and right ventricle. In a matter of ten minutes from the ER to the CICU, our world was completely turned upside down. Suddenly, Meagan needed to be intubated and a ventilator to breath. They reopened her duct to restore blood flow to her organs.
There we were waiting, hopelessly in the PICU waiting room, praying for a miracle. Life had changed in an instant. As a parent, it’s the most helpless feeling in the world when your child may not make it, and there’s not a thing you can do about it except have faith and know she is in the best hands a Primary Children’s. We were given a sleeping room for the night, and there we spent the longest night of our lives. Despair, anger, sadness, insanity … We felt every terrible emotion wrapped up into one. How could this be happening to our beautiful girl?
We asked Dr. Delgado and Dr. Miller of the Cardiac ICU to call our cell phones if anything changed. At 3:30 a.m. we received a call. Meagan’s kidney function had been restored. The medicine was working, but her liver had not been restored. The next day we were told that Meagan’s liver was improving and that they would be able to do open heart surgery later that week. For the first time in 24 hours we had hope, and some relief.
How to Wait
We spent the entire week leading up to Meagan’s surgery living at the hospital. I never set foot outside the hospital. Every time they called a code over the speakers, I held my breath. We found some solace in sharing stories with others whose children were critical; there was a boy with the same condition as Meagan and it felt great to be able to look at his parents and say, “He is in good hands.”
The doctors and nurses, especially Dr. Delgado, and Dr. Miller of the CICU made us feel like we were at home. We got hourly updates; the nurses were always willing to explain the various medications Meagan was on and what they were for. They tried to remove her breathing tube before surgery, but she still wasn’t breathing well enough on her own for that to happen.
Even though it was the longest six days of my life, I walked around the hospital full of gratitude for what the doctors and staff were doing for my child and how well she was being treated. We were surrounded by family and friends which helped some, but a part of me just wanted to be alone. The only way to survive was to put our fears aside and go foward day to day for the sake of our child. If we let our emotions get the best of us, we wouldn’t have been able to help our child in the way she needed us to.
The day finally arrived that Meagan’s kidney and liver were well enough to perform the surgery. We met with her surgeon, Dr. Eckhauser, about one hour prior to the surgery. He explained that Meagan would need to be put on a Heart Lung Bypass Machine, and that in doing so her organs could be damaged and a stroke could occur. Because a machine would be processing her blood in place of her heart and lungs, there were many risks. He also told us that our beautiful girl might not make it through the surgery. As we sat there I just wanted to scream. We had no other choice. Without the surgery she would die.
They handed us a pager for updates and wheeled Meagan back into the OR. The longest eight hours of our lives ensued. Then, we got an update that said “Meagan is on heart/lung bypass, so far doing well.” Then, “He has repaired the holes in Meagan’s heart. She is doing well. “ Then, all of the sudden we got a message that just said “Call us” and gave a number. My heart dropped to the floor. I told my mom to call because I was too afraid of what the news would be. She called and they told her, “We just wanted to let you know all is going well and we are taking her off the bypass machine. Dr. Eckhauser walked into the waiting room about an hour later and let us know that Meagan had fared well, and that she was headed back to the CICU. I have never felt more love and respect for a person in my entire life. That man was our hero. He saved our little girl.
The Best Present
My husband and I were allowed to visit Meagan that night, and I have never felt so much pride for anyone in my life. That tiny little girl, with what seemed like a hundred tubes coming out of her, had fought harder in her 13 days on this Earth than I had my entire life. Meagan spent seven days in the CICU recovering, and then was stable enough to be moved to the Children’s Surgical Unit (CSU). She remained there for another week and was released to go home. She would need a feeding tube, as her vocal nerve was damaged during surgery, but everything else was fine.
We were able to bring her home for Christmas which was the only present we had hoped for. We could not have made it through these times without the caring staff at Primary Children’s Hospital. These doctors are the best of the best. They told us later that not one of them in Cardiology thought Meagan would make it. She was the most critical patient in the hospital for the first three nights she was there.
I believe in miracles, but I also know if it weren’t for the capable hands of one amazing surgeon and the care she received from all the cardiologists and the CICU doctors she would not be with us today. You cannot tell anything ever happened to her seven months later, and we will forever be indebted to the wonderful angels at Primary Children’s Hospital.
Story Lines is a feature on Play Ground telling the personal stories and experiences of people cared for at the hospital. If you would like to share your experience on the blog, please contact us.
