Tuesday, April 10, 2007

In April of 2003, our little girl Serafina was born.

She appeared healthy and was a generally happy child, and we had no reason to suspect she had a life-threatening heart defect. When she was18 months old, she became very gradually less and less active, and at 19 months, her appetite decreased considerably, and I noticed that her breathing was labored. I took her in right away to the doctor. He suspected pneumonia, and after a few days in the local hospital with no improvement, she was flown to a children's hospital about 2 hours away.

While there, a doctor noticed on one of her x-rays that her heart was enlarged. She had severe dilated cardiomyopathy, specifically left ventricular non-compaction. The next day, she "coded" and God spared her life the first time. She was then flown to Stanford Medical Center, to be considered for transplant. In the course of four days, we went from having a sick toddler to having a child possibly in need of a heart transplant.

We spent three weeks at Stanford, after which Serafina was released and did well on oral medications at home.

However, after several months the heart failure worsened and at the end of April, 2005, Serafina went into cardiac arrest while at the hospital for a routine clinic visit. That night, the doctors told us it was "extremely rare" for anyone with her severely low level of heart function to survive cardiac arrest.

God had spared her once again. They said that her only survival option was transplant, and to survive long enough for a donor organ to become available, she would need a device called The Berlin Heart, an artificial heart pump for children. However, it was not approved for use in the US, and would need emergency humanitarian approval from the FDA to have it sent here from Germany. The only way to keep her alive long enough until the device arrived was to put her on ECMO, the heart-lung bypass machine.

The device arrived after five days, she had a 7-hour surgery to take her off of ECMO and implant the Berlin Heart, and for nearly 8 weeks she lived in the PICU attached to the heart pump. Though there are risks with the device, she gained strength and became healthier overall while on the Berlin Heart. A donor heart became available at the end of June, the transplant went well, and her recovery was swift.

Now, Serafina is an extremely active child, full of energy and curiosity. Life continues to be a challenge, but we would never have entered into such blessings if we had not endured so much hardship and suffering. You cannot survive this type of ordeal as a parent unless you live one day at a time, and live each day to the fullest. I had, at one point, fought so hard in my mind against a transplant. But it was our only option for her survival, and God's way of healing her for His purposes. His ways are not our ways, His thoughts are not our thoughts.

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