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Meet Sam S., Parent Mentor at Akron Children's Hospital

Sam S.

Sam's Story

Our daughter was born at full term in a local hospital, and although she had some problems in the first couple of hours, she turned around and about 12 hours after birth, she was doing very well. We were excited to be coming home soon so we could start our life as a family. On her second day of life, she was in our hospital room with us when one of the nurses noticed she had a sudden onset of severe shock and trouble breathing. They pulled her out of our room and into the nursery, where many people worked extremely hard to help her. She was in such a bad state that they called the transport team from Akron Children’s Hospital to take her there to get her on a respirator, as well as further evaluation.

Over the next 25 days, she was treated by the wonderful staff in the NICU at Children’s Hospital for heart and kidney problems. She also had some seizures. She had a machine breathing for her for much of this time and was not allowed to eat for a while, as they thought it could be an allergic reaction to some kind of food she was getting through her breast milk. We were so excited when they finally allowed her to have a teaspoon of food after several days of not eating! Hundreds of tests were run on her to try to figure out what was wrong. Many of these tests were done to see if she had a genetic disorder.

The sight of our baby in this condition was overwhelming to us. It seemed like we had just got there when she had lines going into her main arteries through her arms, legs, head and belly button. There must have been a dozen of them, all giving her different types of medicines.

The hospital has a very effective way of communicating with the parents, and they really worked hard to take our thoughts, beliefs, and desires into account as they helped our daughter. We did not feel like we were a part of the team caring for our child, we WERE a part of the team! We were able to attend doctor rounds every day. We noticed that the staff would go out of their way to try to invite or include parents in rounds when they could not be present physically. As we have learned since, family centered care is not normal at many hospitals. We were just lucky to be under the care of Akron Children’s Hospital, where it is normal.

In the end, our daughter went home healthy in 2006. She never was diagnosed, but we were very happy to have gone through heart, liver, brain and lung problems and come out of it okay. We are confident that the team in the NICU, and the fact that we as parents were so involved helped make that happen.

Sam is a mentor for these care services: Asthma, NICU, Pulmonary, Seizures, Trach / Ventilator

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Sam S. is a parent mentor for these care services: Asthma, NICU, Pulmonary, Seizures, Trach / Ventilator .

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