All three doctors left the delivery room. I was looking down at the floor in a fog. My wife, who had just given birth about an hour ago, was beginning to cry. My In-laws were quiet, not knowing what to say. hese moments are all a blur. My memories of what was said were evaporated with the fear of losing my daughter. I fought back tears, trying to be strong. My wife was laying down in her bed and I gave her a hug. She asked, "Is everything going to be OK?" I replied, "I don't know."
That day my daughter was transferred from Winthrop-University Hospital in Long Island, NY to Columbia University Medical Center in Manhattan. That night, I drove to see my daughter at the ICU wing of the Pediatric Cardiology Division. The doctor explained her condition and how they were going to correct it. My daughter had a rare heart defect called Tetralogy of Fallot with Pulmonary Atresia. There are four abnormalities that come with this prognosis. But only two of these abnormalities -- an artery not forming to provide blood to her lungs and a hole between the two lower chambers of her heart -- would be corrected through surgery. My daughter would need to go through two surgeries to fix these abnormalities. Two surgeries.
My heart was racing and I was beyond scared. I felt helpless because there was nothing I could do. I went into the bathroom and closed my eyes. I thought to myself, it's time to get your head straight. I had to remain calm and stay focused.
Having gone through the harrowing experience that is watching your child undergo surgery, here are six things I wish someone had told me:
1. Stay Positive and Think Happy Thoughts
It's the first thing that everyone tells you: Be positive. When I first heard that, I wanted to throw the person who said it across the room. What did they know about what I was going through? Your emotions are all over the place, especially after the initial shock. I had a difficult time getting my head out of the worst-case scenarios. You have to keep talking to loved ones and think happy thoughts, especially around your child. If you are depressed, everyone else will be, too. It sounds simple, but it's very hard to do. Just keep thinking happy thoughts.
2. Picture it
One of the best things our doctor did was to draw a picture of the defect and how they were going to fix it. When the doctor initially explained the prognosis, my mind couldn't comprehend everything. I began to feel confused and thought everything was happening too fast. Once our doctor drew a picture, it made sense. I began to relax because it wasn't some great mystery. I kept the drawing in my pocket so I had something to reference. If you are feeling confused, just ask them to draw it.
3. Focus on the Present
I felt like I was playing out a press conference for a sports team. "We just need to take it one step at a time. We're not thinking ahead, just focusing on what's in front of us." My wife and I were preoccupied with the present. We asked ourselves, "What is the next step?" Then, we put all our efforts into that step. It kept our minds preoccupied and stopped us from thinking too far ahead.
4. Check your Surgeon
If you know who your surgeon is, immediately go online and research them. If you have friends who are doctors, ask them. Ask your pediatrician. Ask your personal doctor. Ask anyone who would be able to get you more information about your surgeon. The surgeon who operated on my daughter wasn't originally scheduled to do her surgery. I went online and found out who the best surgeon was and insisted that they do the operation. This is not the time to be passive. Do your homework!
5. Be Wary of What You Read Online!
Yes, I get the irony given point #5. But don't go just anywhere online to find out about the ailment or the specific procedure that is being performed. It's the first thing a doctor tells you, and they are right. The Internet can give you the worst-case scenario. If you are going on a forum to read what other people went through, that's different. Or check a highly-regarded source, like The Mayo Clinic.
6. Kids Are Stronger Than you Think
The determination your child shows will become infectious. There will always be setbacks, and that's OK. Always stay positive and keep encouraging your child. They will be home before you know it.
A week after my daughter was born, she had her first surgery. Before the age of 2, she would have her second one. Our families were there to help us through it all. But words, although they help, can only go so far. What drove my wife and I crazy was the waiting. The waiting for the impending doom, which was the surgery itself.
But having gone through this, what I feel most is lucky. There are people reading this who are shaking their heads saying, "Lucky?" Yes. My daughter is lucky, because at least there was something the doctors could do. In some cases, there is no fix. That desperation and loss of hope is a feeling no one parent should go through. Now, my daughter is almost 3 and doing great. She is living life as a normal kid and I wouldn't want it any other way.
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