I doubt I will ever forget the first time I took my preemie to the grocery store with me. It was a few months after his discharge from the NICU and I was anxious to start showing off this new baby of mine, even if it was just to a friendly cashier.

What I did not expect was the lady who walked up to Ben in his infant carrier, with a fake smile on her face, and look at him. I watched the smile freeze on her face as she started to walk away, and then she turned back towards me, saying, “they can fix that, you know. I used to be a pediatric nurse and they do a great job fixing that nowadays.”

In retrospect, I can think of at least a dozen ways I should have responded to her, but in the shock of the moment, all I could say was, “yeah, I know,” with a fake smile of my own. She looked at Ben once more, shook her head, said “God bless him,” and walked away.

As I stood there next to the iceberg lettuce, fuming, I looked at my baby, snuggled in his infant carrier, and he smiled at me. Immediately, my anger dissolved, and I decided right then and there to not let the rude people of the world bother me or my baby. Even though he is still so little, I knew then, as I do now, that I must set the example for how he should react to such people as he gets older and that will be to simply ignore them.

You are probably wondering what she was referring to when she said “they can fix that.” Allow me to introduce you to my 29-weeker, Benjamin:

First smile at 4 mths. actual age!

First smile at 4 mths. actual age!

He was born with both a cleft lip and palate, as are approximately 4,440 babies each year. Why this happened to Ben is unknown. I like to think I did everything I was supposed to do to protect my baby, which is why I was so upset when I found out Ben possibly had a cleft after my mid-pregnancy ultrasound. I also began to worry how my baby was going to look and, more importantly, how he was going to feed. When I was 25 weeks pregnant, a 3D ultrasound confirmed he had a unilateral cleft lip and palate

ultrasound

It was only four short weeks later when I suddenly developed severe preeclampsia and Benjamin had to be delivered by emergency c-section. No longer did I worry about his cleft, or what he would look like. All I cared about was that he would be okay and he was.

lots of tape+stacked towels needed to support intubation tubes because of cleft.

Fast forward a year, and three surgeries later, and Ben is not only doing okay, he is doing great! As much as I wish he had not been born so early, I believe everything he endured during his 68-day NICU stay helped to prepare him (and us) for the whole cleft repair process. We had become used to extended hospital stays, dealing with nurses and doctors, and speaking up when needed. Ben especially has proven to be highly adaptable and amazingly strong (but aren’t all our preemies?) His third and last surgery to repair his palate is supposed to be the hardest on a baby, but all of his nurses and doctors were amazed by how quickly he recovered. Upon waking in the recovery room, the nurse said he opened his eyes, looked at her, and smiled!

As for that smile of his, it certainly changed a whole lot after his lip was repaired. In fact, he looked like a completely different baby after the surgery. Its hard to put into words how his dad and I felt when we saw him for the first time in the recovery room. He looked so good, but so, so different.

First smile 4 days post-lip repair/ 6 mths old.

First smile 4 days post-lip repair/ 6 mths old.

Other than the aforementioned rude lady, and a very few uncomfortable stares from some strangers, most people have gone out of their way to smile genuine, kind smiles at Ben and congratulate me on my new baby. In addition to all I have learned so far, not only as a new mother, but as the mother of a preemie with special needs, I have learned to never take smiles for granted. I try to be generous with mine and, more importantly, to be sincere with them. Because, after all, isn’t a smile worth a thousand words?

Happy 17-month old!

Happy 17-month old!

To learn more about cleft lip and palate, please go to:

http://www.nlm.nih.gov/medlineplus/cleftlipandpalate.html

http://kidshealth.org/parent/medical/ears/cleft_lip_palate.html

This page's content was last updated on Apr 5, 2018 @ 2:45 pm