Surgery becomes necessity

When their 17 month old daughter turned blue during a routine examination with a Sick Children's Hospital cardiorespiratory specialist, the nightmare began for Paul and Liz.

Born with a congenital heart defect, Geordi had several small holes in her heart as well as a thickened pulmonary valve and some obstruction in the right side of her heart. She had been checked regularly by cardiorespiratory specialists, a paediatrican and her family doctor.

Congenital heart defects often cause poor weight gain and growth, weakness and fatigue with the child having difficulties breathing and sucking because of weakness and heart failure.

"I was slow to develop," says Liz who has a similar condition with a single hole in her heart. "We were told by the doctors not to worry about her development because the slower development would be normal for her."

Within hours of her visit to the cardiorespiratory specialist, Geordi was admitted into Sick Children's Hospital in Toronto and Liz who had a history of congenital heart defects in her family decided she would keep a journal for Geordi so one day Geordi would understand what she went through.

During surgery doctors discovered a third hole in Geordi's heart which had not been detected at birth, closing the holes, Geordi's right venticular outflow tract and left pulmonary artery had to be remodeled.

Paul and Liz waited for five hours until they were informed by a surgeon that the surgery results were positive and Geordi had satisfactory post-operative progress.

With Liz staying at Sick Children's Hospital, Paul found himself travelling back and forth while he worked.

"There would be days I would be working wondering what was going on," he says. "Occasionally I found both of us under a lot of stress while trying to balance out how much time we could spend with each other and how much we could spend at Geordi's side."

Geordi stunned her parents and nursing staff by being extremely calm, something Paul says he received several comments about.

"The nurses commented that Geordi was a very happy and good child to be around. I guess in PICU the nurses are used to babies with this type of heart problem to be extremely fussy and cry a lot...but she was a really happy baby despite everything that was happening to her."

A Turn for the Worse

With influenzia, phenomia and a bowel infection plaguing her tiny body, doctors began to have problems stablizing Geordi. Paul and Liz began to feel their optimism slip as their child's condition went up and down.

Paralyzed and hooked onto various tubes, Liz says she was told that her daughter was "not in immediate danger" but was terrified all the same.

"I am talking out of my mind terrified," she says. "Some hours I was prepared to lose her...others I thought I'm going to die. I was just taking one second, one hour, one day at a time."

On March 8, after picking up a copy of the Lion King video and some new toys for Geordi, Paul and Liz returned to Sick Children's Hospital to discover Geordi's condition had become critical.

Despite intensive respiratory support, Geordi had become hypertensive and had a cardiac arrest.

Excerpts from Liz's journal

February 17, 1995 - Dear Geordi. Today your entire world was completely pulled apart. For the first time since the day we took you home you were no longer able to reach for me when you wanted a snuggle and I was no longer your primary caregiver. Both of us are going to have to learn to adjust little one. You are going to have to find the will to live on your own and I am going to have to relinquish responsibility to others who don't love you as we do. It is devastating watching you all covered in tubes and needles...but it is necessary or else you'll probably die. The day we bring you home again will be as wonderful as the day we first brought you home.

February 18, 1995 - We said goodbye at 1 p.m. and got the good news at 5:45 p.m. They reconstructed your pulmonary valve and widened the artery. Then they plugged those annoying holes. After the surgery you looked incredibly peaceful and beautiful. You really reassured me...and you were pink - not blue. Many, many hugs and kisses little one.

February 21, 1995 - You just had a major tube removed today! We're making progress! You just took this pen when I offered it to you - but I realized that right this minute - it's been 71 hours since you came out of surgery - you're over the major hurdle - out of the danger zone! Way to go wonderful! I love you.

February 23, 1995 - Well tough stuff, you've just had your first set back, and they've decided to restart some drugs. You have a very sick heart and it just wasn't ready to work all by itself yet. You are keeping much calmer than Mommy though. Necessary pain. That's the pain you need to survive. It's a Mommy's job to spare you unnecessary pain. I hope some day I can make you understand.

February 25 1995 - You are breathing on your own. That nasty tube in your nose is going to come out this afternoon.

February 27, 1995 - Found out you started wheezing late Saturday night. They think you have a touch of pneumonia - just another plunge on this roller coaster first we were a little frightened but you see to take it all in stride and are looking very comfortable considering it all. So I guess you're going to be here a few more days.

March 2, 1995 - The doctors have no idea why you are so sick. You have made no improvements in the past week that you didn't lose again last night before they put the breathing tube in your nose. Did you ever fight their attempts to help you, that sight will haunt Mommy the rest of her life. I hope you never remember.

March 4, 1995 - Sweetie, you are hooked up again to the tubes. Yesterday all you were connected to was the ventilator. The doctor's don't understand why you're not getting any better. They even have you back on muscle relaxant. Are you giving up on us sweetheart? Is the shock of this too much for you?

March 6, 1995 - I asked just how sick you were - unfortunately questions like that trigger concerns from doctors and nurses and next thing I know I've got a doctor looking me straight in the eye telling me that you are not going to die and perhaps I should talk to somebody. It is okay to cry. I am worried little one. I am desperately afraid to lose you. You are very, very sick - I can't believe how sick you are. Can you every forgive me for giving you a bum heart?