Sharing difficult experiences in life is a wonderful way to create support and community for those going through similar trials, whether it is through community outreach or as you have done online. I found your facebook group and web page along with other online bloggers to be very uplifting in a trying time with my son Josiah. Thank you for your efforts and providing a place for individuals and families dealing with cleft to turn to, and thank you for giving me the opportunity to share my story.
It was four days prior to my birthday, and six weeks since I had my last period. Full of anticipation, I stood giddily and impatient over the bathroom counter awaiting the results of a home pregnancy test. To my liking the test showed positive. Immediately I called for a doctor appointment to start prenatal care and purchased prenatal vitamins. I wanted to do everything I could to keep my pregnancy, and to give my child the best start at life. The next eight months were spent watching my diet and environment along with reading about every development my fetus was undergoing, week by week.
The pregnancy with my son was healthy, so much so when I asked for an extra ultra sound at six months, my midwife declined saying since there were no complications there was no point. At a week and a half past my due date, I got my extra ultra sound along with stress test bringing startling results. Due to low fluid levels, I was to be admitted and induced right away. Oh, and my child has a cleft lip. Wow! This whole time under the impression I was to have a perfect bouncing baby boy, I was faced with the reality of ‘I was to have a baby boy with a cranio facial defect’.
No time to absorb, rationalize or come to terms. Only time to “Push!”. 34 hours later Josiah was born via emergency cesarean. Fortunately his cleft lip was minor enough I was able to start breast feeding him after waking from anesthesia. Because of the severe bruising on his skull, within a couple days he became jaundiced and was put into the NICU. As if it wasn’t bad enough, I thought.
Witnessing people go through pregnancy and child raising, I assumed my experience would result in no different a feat. I assumed wrong. I had no inclination any of this would happen, let alone what cleft even was. I had seen a few people in my life with a small scar on their lip, but never gave it much thought. Now I was forced to know. The next few months were full of education on the topic.
For the first month my mind was full of turmoil and constant blame. As if postpartum hormone bombardment wasn’t enough, I was beating myself up. I was seeking the cause. I thought I may have done something wrong, or maybe even someone I was close to. I blamed my genetic make-up, and even went as far as blaming my prenatal vitamins. Truthfully, something did cause it but that doesn’t matter. Once a catalyst has done its deed, there’s no way to take it back. I will probably never know what the catalyst was, and any effort put forth in finding it will only take from the energy I should be putting into making sure my son has a happy life.
The surgery itself was an emotional upheaval, and there were moments when I questioned whether I made the right decision. Standing over a bed in the PICU looking at a heavily drugged baby with cords hanging off of him similar to the ones in the NICU, tears fell down my cheeks uncontrollably. His lip stitched and swollen, his cries horse from the breathing tube, I was again found in that place where nothing, nor no one could ever prepare me for. My three month old baby had just been cut and stitched. His pain was in my stomach. There was not a thing I could do to make him feel better.
Gradually over the next week as he healed it became easier. Accustomed to his half split smile with large amounts of gum showing, I had to learn to see him in a different way. He was the way I had come to know and love him no more. He had a new smile. I love him no matter what, and no matter how much I miss his old smile I will never regret what I did for him. I changed his life in a positive way; a way that is not an option for many born with the same congenital defect. He’ll be happier for it, and therefore so will I.
Josiah is now six months old and continues to thrive. I look at him and see a handsome bundle of joy. I am able to recognize facial characteristics of both his father and I on him. There is no way I would trade him for any other baby in the world. He is mine, and he is perfectly fit to be my son.
For others who are expecting, or have just had a baby with cleft I would like to tell you how much I feel for you. It’s easier when it’s someone else to say it’s going to be okay. I’m telling you as someone who has had to deal; it IS going to be okay. It’s not your fault, let alone anyone else’s. It just IS. Your baby deserves to have you wholly and for you to give every amount of love and support you can give. Your baby is perfectly fine and needs you more than anyone else. I would also like to tell you, it’s not going to be easy. But please know it WILL be okay. Your baby is yours… and always will be. You are blessed.