Charlie Livingstone's Story - Written by Charlie's Parents

Charlie’s Story
~Written by Charlie Livingstone’s parents

We had two previous miscarriages at early stages of pregnancy and were quite happy to have made it through the first trimester with our third pregnancy. One day we had a large gush of fluids and went directly to the IWK to find our water had broken. We will skip some details and jump to January 2nd, 2004 when the contractions were becoming very steady and constant and we had our first of many bedside consults. We were told that we would probably deliver that night and things were not good. The statistics showed that the baby only had about a 10 % chance for survival and, of the survivors, over 80 % had severe disabilities. We were given three choices on how to proceed:

1) The baby would be born wrapped in a blanket and passed to us to hold for his/her last breaths;

2) The baby would be born and the doctors would try to save the baby no matter what shape he /she was in;

3) The baby would be born, the team would examine the baby, and if he /she was doing OK they would help him/her the best they could and treat as palliative.

We chose the third option. The odds were against us, but at 8:59 pm Robert Charles Neil Livingstone (Charlie) was born at 23 weeks gestation weighing 1 pound 5 ounces (592 grams), and 12 inches long. He cried right away, sounding almost as loud as a kitten, and moved all his arms and legs ready to fight, and over the next four months he fought literally the fight of his life. 

Charlie had several problems along with his extreme prematurity, including right pneumothorax (collapsed lung), Bronchopulmonary Dysplasia (chronic lung disease), PDA (heart murmur), Sepsis (infection), Hypertension ( high blood pressure, and also low pressure briefly), Hyperglycemia (high blood sugars), a hernia , and he was Anemic which meant he had to have nine blood transfusions.

Over the next few weeks the IWK became our home (literally). In the Neonatal Intensive Care Unit (NICU), they took wonderful care of Charlie and although they probably thought we were spending too much time at the bedside, if that’s possible; they were always supportive of us and made us feel at home and part of the care team. We helped by changing some diapers and washing his blankets (which were actually facecloths) and providing Charlie with what only his Mother could, breastmilk.  For everyone out there who has never had a baby in an incubator you wouldn’t believe how nice it feels to change  a diaper or change some sheets when you feel so helpless. The entire NICUl team was always willing to explain things and let us lend a helping hand; and they were also a real help when we needed emotional support. These small details are what sets the IWK staff apart from the others.  

Over the next five or six weeks Charlie had a real tough time. Every day was like an emotional roller coaster with all of the ups and downs, but it seemed we had more downs than ups. We did manage to laugh some but cried more in the beginning.  Every day was a struggle for life and we began to wonder if Charlie would ever get to come home with us. When we saw how hard he fought to survive every day his strength and will to live are really what powered us through every day. 

Then one day a doctor walked in to speak to us and told us that he was the head of the Perinatal Follow-Up program. The Follow-Up Program is a wonderful program at the hospital where premature children meeting certain criteria are followed until the age of three and help is given, or resources offered, where it is needed. To us that day it meant that someone thought that we would get to take Charlie home some day and we had waited a long time to hear that. We don’t think that was the intended purpose of the meeting but it sure picked up our spirits.

After four months in the hospital Charlie came home with us on his due date.  He was still on oxygen and four different medications, but we had been well prepared in the hospital to provide his care. After that, we had appointments with the Perinatal Follow-Up program over the next few weeks and we sure had a lot of questions. This was our link to the IWK that we never wanted to lose. We phoned or e-mailed probably daily asking questions from medications to bowel movements and although we know everyone was busy our questions were answered no matter how insignificant they were. 

The Follow-Up Program to us really was a saviour. After spending so much time in the hospital setting and constantly having the best doctors, nurses, therapists, nutritionists, etc right around the corner, we had to wait for our Follow-Up visits to get the feedback we needed. The program follows kids until they are three years old, although we would love for them to follow Charlie until he is married with his own kids. They watch everything about him: his growing, his learning, seeing, hearing, eating habits, just to name a few. 

We are happy to report that Charlie is a perfectly normal little boy who has no physical or cognitive problems that we are aware of at this time.  He loves swimming, skating, and running, and has just learned how to count  and is starting his ABC’s. He also loves to read books, which was started by some very special nurses in the hospital and something Charlie hopefully will always love. Charlie really beat the odds and we will forever be proud of him and his remarkable story.  He has gone through more in the first two years of his life than people should ever have to go through.  Thanks to the IWK staff for everything – we hope you are all proud of what you do and how you have helped us. To all the other parents out there, there are statistics for a reason and everyone has a chance.