What It’s Like to Look at Photos of Myself as a Premature Baby

I was born three months prematurely, surprising my parents as an early wedding anniversary gift. Yes, I totally crashed their wedding anniversary date. My mom had gone in for a scan, and before she knew it, she needed to give birth. I weighed no more than 2 pounds and was in the hospital for three months.

At 3 months old, I caught meningitis and was diagnosed with an incurable disease called complicated Ebstein anomaly. Although they never show it, I know my parents lives changed a lot that day. I will live with this illness for the rest of my life. I have my bad days and good days.

When I asked my mom what it was like to see me so small and sick, she said, “I just wanted to bring you home.”

My parents took photos and created an album for me. I don’t look through them often. When I do, I can’t believe how small and fragile I was. I can’t imagine what it must have been like for my parents to watch me like that, not knowing if I would ever come home.

It was always awkward at school when we had to bring in pictures of ourselves as babies. I remember one time, I brought my photo in, and my “friends” looked and laughed, saying, “You look like an alien.” They asked, “Why do you look like that?” and “What are those tubes?” I would explain I was born early and had an illness, but no one understood. “You’ve got a metal heart” and “You don’t have a heart” they said. “Alien,” they would shout. The phrase that hit me hardest: “You’re not normal.” At the time, I laughed with them, but at home I cried and for a time felt ashamed of what I looked like as a baby.

The photos may not look like your typical baby photo. However, they are me, and that is what I went through and still live with. I wish people understood what it’s like to look back at yourself in that state. To spend your first moments in a hospital and most of your childhood around doctors and surgeons. When you laugh, you’re not laughing at a picture — you’re laughing at me.

Since then, I find it extremely hard to visit babies in the hospital. There are times I’ve visited a cardiac ward and seen babies in incubators with several tubes coming out of them. I’ve cried and left the ward to pull myself together again. When I see a parent watching over their child huddled in an incubator, all I want to do is go up to them and apologize for what they are going through, but also give them hope for the future.

Recently someone asked me, “How do you heal from something that is incurable?” You don’t! You learn to live with it, and it becomes part of who you are. A part of you that is unique and amazing.

There are so many things I want to say to those of you who were premature or are living with illness — whether you were born with it or have just been diagnosed, and for you and your loved ones, because it’s just as hard on them. If you would like to see my message, you can do so via this video.

I never knew Prematurity Awareness Month existed, but I’m so glad it does. It’s a time for people to remember premature babies and to celebrate them. It’s also a time to raise awareness and hope for those going through it.

To the parents of premature babies, know “it’s OK not to be OK.” I can’t imagine what it must feel like. Know you’re not alone. There are people out there going through the same thing. To the parents of premature babies who have perhaps lost their child, I am truly sorry for your loss.

For the premature babies, newborn or now grown up: I believe only the best people are born early. “Good things come in small packages.”

Follow this journey on Hannah’s Heart Beat and the Hannah’s Heart Beat Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.