Drew is our son, who was born on November 26, 1996, weighing 8 lb, 8 oz. He is our 4th child of 5 and was born chubby, happy, and healthy…

The next morning as I was preparing to leave the hospital, our Pediatrician (PED) gave Drew the once over, and told me that he heard a heart murmur. I was to have him in the office in about a week to see if it was still there. We went to the PED’s office, and were told that the murmur was still there, and that Drew needed and echocardiogram (echo). The technician who did the test had her supervisor come in, and he took control of the machine and looked at Drew for a long time. He told us that Drew had a hole in his heart, and that our PED would have the report in a couple of days.

We got a call about a week later saying that our PED wanted to see us. We took Drew in and were told that he had a hole between the pumping chambers (VSD) of his heart. He was referring us to a Pediatric Cardiologist (PC) at the Stollery Children’s Health Center. His appointment was January 9 1997, a day that would forever change our lives.

We were strangers in this cardiac world. We went for the appointment, and Drew had an ECG, and a chest x-ray. Our PC read the report from the other hospital, and wanted the test repeated. Once again we were in the examining room with our PC and were told that Drew had a “generous” VSD, pulmonary stenosis (which was actually protecting his lungs) and some muscle bundles around the pulmonary valve. We were introduced to Lasix. As parents, the wind had been taken from our sails, and our dreams were shattered. We were told that most of these holes will close themselves, and that some will need surgery. He was optimistic, but not convincing.

A few weeks later, Drew went into congestive heart failure for the first time at 9 weeks old. I remember sitting in the PED’s office as he was making the call to the PC. It had never occurred to me until that moment that his unhealthy heart could actually stop. I sat there and I cried. We were sent to the hospital and were admitted immediately. It was then that I realized how lucky we were. There were so many children that were so much sicker that Drew. They stabilized him, and 4 days later we were on our way home and with more Lasix and Digoxin.

Things stayed pretty much the same with alternating weekly visits between our PED and our PC until our visit in mid March. It was here that our world was rocked once again. It was the usual tests, EGC, echo, and on a whim (he obviously heard something) our PC ordered a chest x-ray. When he returned to the examining room, he didn’t have to say anything, his face said it all.

Drew’s lungs were full of blood, and he was going to be presented to the surgeon on the next Thursday. Boom! We went from hearing “these hole close” to “surgery” in less than 30 minutes. Now we had to go home and wait for the phone to ring. The Monday following the presentation we got a call from the surgeon requesting a Cardiac Catherization (CATH). Once again, something new.

Drew had his CATH on Monday April 20, 1997. At 7:00 in the morning, we had our baby at the hospital, and as he slept, we handed him over to a nurse who disappeared behind closed doors. We were scared and anxious. Three hours later, when we got our baby back, he was happy and unaffected by the whole ordeal. We were told things looked good, and that surgery would probably be 2-3 months away.

We were still holding out hope that Drew wouldn’t have to go through this surgery thing. We went home and called everyone to say that he was doing well, and that surgery would be in the future, if at all. On Tuesday, our PC called to say that upon review, Drew was going for surgery on Monday April 27 1997. WHAT!! Once again we went from 2-3 months to 6 days.

I spent that day recalling everyone and telling them that Drew was having his surgery on Monday. We were in shock. Thursday and Friday were spent at the hospital doing pre-admission and pre-op preparations, and Drew was to be admitted to the hospital on Sunday no later than 3:00 PM. Life was suddenly a whirlwind. It was only with the help of our families who took care of our other children that we made it through the whole surgery process.

Sunday arrived, and we left teary eyed for the hospital. Drew was admitted, and sent to the cardiac unit. I stayed with him as I was still nursing, and he could have on last feeding at 1:00 AM. It was one of the longest nights of our lives. At 6:30AM we handed our happy, smiling, flirtatious son over to a nurse. He was obviously unaware of what was going to happen to him.

A little over 4 hours later, Drew was taken to the Pediatric Intensive Care Unit (PICU), the surgeon spoke with us and said that he had patched his "generous” hole, removed the muscle bundles, and opened up the pulmonary valve (valveotomy). Drew had tolerated the surgery well. It was so hard to see our little one with so many tubes, but the care he received was second to none.

Eight days later we were back home again. Drew had energy, color and a zest for life that we hadn’t seen in him before. It was good to see our son healthy.

Ten days later our PED took out the stitches and 6 weeks later our PC gave him a release for a year. YEAH!! It was a good feeling. At his one-year surgical check-up we were given a release for 2 years. Life was indeed good.

At Drew’s 3-year check-up with our PED, he once again heard a murmur. We were off to see the PC again. We were told that Drew had developed a complete heart block, and that he had severe regurgitation from the pulmonary valve, regurgitation from the tricuspid valve, atrial tachicardia and quite possibly atrial flutters that will most likely require a pacemaker. They also told us that Drew could be facing up to 4 more surgeries before the age of 18. We were stunned.

Today Drew, at almost 5 years old gets through his days with medication and a healthy outlook. Recently after a session on the playground he said to me “ Mom! My ticker feels like it is going to beat out of my chest”. He doesn’t have the same energy that others his age have, but he makes up for it in other ways.

For now, he is aware of his limitations, and knows when he needs to rest. As parents, we struggle daily not to put limitations on him. We are teaching Drew to be proud of his scars because they represent his struggles, and can bring awareness to others who suffer from heart disease. Until Drew, we were untouched, and unaware that heart disease, the leading birth defect, could affect children in so many different and serious ways.

We are so fortunate that our experience with Drew has given us the opportunity to be able to support others whose children are struggling with heart disease. We are so thankful for the many people that have had a part in saving Drew’s life. Our PED; for without him we could not have made it through this whole thing. His honesty and openness keeps us up to date, and helps us prepare for things to come. Thank you Andy. Of course, there is also the cardiology team whose refined skills and gifts have earned our trust and have given us hope for Drew. These are just some of the people that Drew owes his life to. Also our family and friends who have not only supported us, but more importantly have been there for Drew. They have shared with us, and have never backed away, even when looking to the future, or when things got tough. We are truly grateful.

Pam

Copyright (c) Pam-2001

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