Meet Sam S., Parent Mentor at Akron Children's
Sam's Story
Amelia Kate was born on January 26, 2006, at full term in a local hospital. 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 2nd 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 to take her there to get her on a respirator and further evaluation.
Over the next 25 days, she was treated by the wonderful staff in the NICU at Akron Children’s for heart and kidney problems. She also had some seizures. She had a machine breathing for her for much of this time, and she 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 Amelia had a genetic disorder. Luckily, Akron Children’s is a Level III NICU, which means that they have all kinds of specialists on hand to treat and test all of these different problems, usually without moving her from her room. The neonatologists have the experience to coordinate all of this.
The sight of our baby in this condition was overwhelming to us. It seemed like we had just gotten 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. They even had one machine that would pull her blood out, analyze it, print a report out, and then put the blood back in her. She had one nurse specifically assigned to her, 24 hours a day for all but her last couple of days in the hospital. It was so confusing with all of the different medications. For a short period, she even had 2 nurses on just her! The nurses did such a fantastic job of not only caring for our baby in a very tense situation, but they also looked out for our needs as well. At one point, we thought we may get transferred to another hospital, and we had checked out of our room at the Ronald McDonald House. When we got to the bedside, and were told there was no longer any reason to transfer us, we turned around to go get our room back before they gave it to someone else, but our nurse had already gotten it back for us.
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 Amelia. We did not just “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 actually noticed that the staff would go out of their way to 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, where it is normal.
The nursing staff was simply incredible. They operated under a very stressful situation, without ANY mistakes, and they had nothing but patience for us. I asked non-stop questions, and they took the time to answer every one of them. Not only that, but they went out of their way to do extra things for us, like make sure that we got checked in at the Ronald McDonald house, or urging us to leave the unit occasionally to get a break. This wonderful service gave us a great desire to give back to the staff at the hospital, and our Walk for Babies fundraiser was born out of that desire.
Amelia will become a teenager in January, and she is developing normally. She has her kidneys examined once annually, but other than that seems to have no long term issues, nor does she take any medication. We are eternally grateful for the people at Akron Children’s that gave us this wonderful outcome.
Sam is a parent mentor for these conditions: Seizures.
Sam is a mentor for these care services: Cardiology, Genetic Syndromes, Nephrology, Neurology, NICU, Seizures
