Saturday, August 4, 2012

Life Lessons - Cleft Parents

While I was writing my last post about Sassy's upcoming surgery, a flood of emotions came over me. As parents, 374 and I are no strangers to medical procedures, doctors' offices and hospital stays. We had more doctor appointments in our first year as parents than most probably have in their first three or four years.

Bubby was born with a cleft palate. We did not know about it right away. It was almost 16 hours after his birth before everyone figured out why it was so difficult to get him to feed. To be completely honest, I knew about cleft lips however I had no idea there was a cleft of the palate. No one in either of our families was born with a cleft palate nor lip.

We were very lucky. Bubby could have been born with a cleft lip and plate. The cleft could have come through his gums and caused the need for major orthodontic work. It could have been much, much worse.

After bringing our sweet boy home from the hospital, I spent what little free time I had as a new mother immersing myself in any cleft information I could find. When you add in all the extra pediatrician appointments to monitor his eating and weight gain, sick baby visits for ear infections, and appointments with the plastic surgeon who specializes in cleft repairs, my brain was a frazzled mess those first few months.

Bubby's cleft repair was not his first surgery. We got a practice run for that big surgery at five months when he had ear tubes inserted. The cleft repair came at 18 months. The repair was a success - the surgeon was able to close his palate and it healed perfectly. Again, we were very lucky. For a cleft kid to have their FIRST surgery at 18 months is pretty unlikely. Most kids have had multiple surgeries at that point. He was scheduled at 12 months, but they needed to give his mouth more time to grow. Bubby did not require another surgery until last August. He was not progressing as he should have with his speech therapy and he was very nasally when he talked. This second procedure was elective. It was hard to make the choice to put him through another procedure, however it has paid off immensely. His speech has drastically improved in this last year.

"It could have been worse" is the mantra that 374 and I have adopted over the years. Every time we felt like things couldn't get much worse, we reminded ourselves that in fact they could be much worse. The birth defect could have been greater, the feedings could have been harder, the first surgery could not have been as successful and required followup procedures. Fortunately none of those things happened. I think it is very important to look for the positive when things get tough. Without the positive, there were many times things could have been much harder to deal with.

As parents you never want your child to face any kind of hardships. To see the strength this little boy has had in his first seven years is inspiring. He used sign language to communicate before his surgery when he was unable to form sounds. He developed extraordinary coping skills to deal with strangers or those who did not converse with him on a daily basis to help them understand him when he spoke during the first few years of speech therapy. He was a trooper through all three surgical procedures.

It is inevitable that there will be many more doctor visits to come. There may even be more surgeries, depending on how his mouth grows and the previous procedures hold up.

I wouldn't trade these last seven years for anything. I can't imagine a different road with this child. He has taught 374 and I both so much about life and what is really important. The strength he has shown has taught us that if this little boy can do it, so can we. He is our little fighter, and we couldn't be more proud.


  1. You have got a beautiful outlook on life and your son is gorgeous. Thank you for sharing with us.
    As a mum, I like to also live by the "it could be worse" mantra, but you give it a whole new meaning for me, thank you.


  2. Yeah Go Bubby, this is a very uplifting happily told story that I am glad worked out so well for your family. Surgeries are so complicated when it is with our children so I am glad yours was spared the early numerous ones that many do have to go through. Keep that positive a flowing :))