Featured cherub of the week is angel cherub Makenzee Spencer. Makenzee is the daughter of our Utah Ambassador, Melanee Spencer. Melanee had this to share about her daughter’s journey with CDH:
“Makenzee was due March 21, 1998. Don’t worry every thing looks fine, I remember being told. The day before I was scheduled to be induced my water broke. That was 4pm. April 1st at 11:05pm, Makenzee was born at Bremerton Naval Hospital. I never heard her cry. Dr. Pruss told me to ring the call light. I kept looking over to the little bed they had on the other side of the room, but I couldn’t see anything just a lot of Dr.’s and Nurses working on her. More kept coming into the room. After around five or ten minutes, one of the Dr.’s had her in his arms wrapped in a white blanket, said they would bring her back or take me to her as soon as she was stable. I’ll always remember how purple she was. 11:30 p.m. a Dr. came back in the room and told us that we had a sick little girl. She has CDH and needed to be life flighted to either Madigon Army Hospital or Children’s Hospital of Seattle. Then a nurse came in to let us know she would be flown to Children’s. Makenzee would require ECMO. They would be waiting for her. The Dr. explained the best he could what CDH was and that they weren’t sure if she even had a left lung or if her heart was working properly since they found a murmur. He gave her a 10% chance of survival if they could stabilize her enough to be flown to Seattle (which is a five-minute flight). At 3:00am she was finally ready to be flown to Seattle after they finished placing chest tubes to relieve pressure in the chest so she could fly. By 5:00am a precious little girl was on ECMO. She spent the next week critical, but fairly stable. On the 13th of April they tried the first ECMO trial off after the first 15 minutes her SATs and blood gases were so poor they stopped the trial off. On the 14th they tried another trial off this time she made it the hour, but her CO2 was too high. This also was the case for the 15th. On the 17th, Makenzee was placed on the oscillator to see if that would help her lungs better than the vent. The first couple of days nothing changed. We were no closer to coming off ECMO or surgery. April 21st trial off ECMO again,not good, the Dr‘s informed us they did all they could except the surgery to repair her diaphragm. Makenzee was in surgery for three hours. We were told the surgery went well. We found out that her stomach, intestines, liver, kidneys and spleen were all in the chest. And that the front left side of her diaphragm never formed they had to build her a diaphragm. On the 26th, Makenzee was taken off of ECMO it was decided it was not doing her any good. It was a rough night her condition was getting worse. She stabled out in the morning, so we went home to get clean clothes and check on the other children. The Dr. called to let us know that her SATs and gases were dropping and he didn’t think she would make it much longer. We got there and the Dr. said you won’t believe this but her SATs and gases are okay. We waited with her and later that evening the numbers slowly started to fall. We were informed they was grasping at straws now. She was given a steroid and Diphyridamole and put her back on the ventilator. I mention the Dipyridamole because at the time Makenzee was only the second baby given this drug for pulmonary hypertension in Seattle and their pharmacy couldn’t find data on this drug with babies. This seemed to work, her SATs were good, blood gases were the best they had ever been. And for the first time the ventilator was being reduced (pressure/rate). Three days later her SATs dropped, they placed her back on the oscillator. On the morning of the 4th I was met at the wash area by one of the Dr’s. He told me it was not good, Makenzee’s chances of survival are poor, but he wanted to give her twelve hours. In that twelve hours, I had seen my baby code every three hours. They put her back on the ventilator. After thirty-four days, I finally got to hold our little girl. At 10:00am we were told that her kidneys were failing and they could put her on dialysis. We declined. At 12:30pm, Makenzee died in my arms.”
