The 20 week anatomy scan for pregnant women is a joyous occasion. The major attraction is that you’re able to find out the gender of your baby. My husband and I anxiously glared at the black screen with white lines and scribbles, waiting for the tech to announce the gender of our first baby. . . it’s a boy! We were very excited but still waiting to hear what she had to say about the rest of the ultrasound. Kidneys, spine, and heart all looked normal. The relief flooded my body and I couldn’t help but cry happy tears. The image of my baby and the beginning of his life was getting clearer. Once we got home I got a phone call from the OBGYN’s office. The tech on the phone explained after examining the images further everything looked normal EXCEPT their was a shadow above his lip.
At 22 weeks pregnant we were told by a maternal fetal specialist that our son would be born with a cleft lip and possibly cleft palate. The extent couldn’t be confirmed through ultrasound and we wouldn’t know until he was born. I was overwhelmed with a new list of first time mom items that included a special bottle, finding a surgeon, and understanding how this would affect my son.
A cleft lip is actually the second most common birth defect (1 in 700). It is described as an opening in the upper lip. When it affects one side it’s unilateral and both sides it’s bilateral. Sometimes it affects the nose and palate as well. Each case is different in severity for each child. My son was born with a unilateral cleft affecting his left nostril and a hole in his sub-mucous palate…phew, I can remember that but I can’t remember to buy bread when I go to Publix.
Breastfeeding with a birth defect
The hardest part of accepting my sons birth defect was that he would not be able to nurse properly. You know that image that I had in my head? It was me wearing a beautiful white flowing dress with a flower crown nursing my newborn effortlessly and happily (hah, I know right?!) It was a far cry from reality. The hole in his lip allowed air to flow through so he could not latch properly and the air traveled through into his digestive system causing severe gas.
I exclusively pumped for the first 10 weeks. The hardest thing I have been through in my life. My supply was always just enough to feed every two hours. Between meeting the needs of a colicky newborn, pumping then washing all the equipment-I was a zombie. Barely making it through each day and night until the 10 weeks were up and then it was time to repair his lip.
I tried to stay as calm and strong as I could that morning. I was living off little sleep and at the moment little food. As a result, I don’t think my brain had enough energy to worry as much. I was thankful for that.
A couple hours later he was out of surgery and awake from anesthesia. It took a little while for him to get back to himself but even after only knowing him for 10 weeks his gentle personality was shining through. It was time for me to try to nurse. He was able to properly latch on and suck, full force! It was an incredible moment that after all the hard work of exclusively pumping I now was able to breastfeed him this way as well.
The following two weeks after surgery we saw a significant decrease in gas causing him to be a lot less colicky. We were surpassing more than two hours of sleep at a time and nursing successfully. As he grew, the hole in his sub-mucous palate naturally closed.
But, we still have more obstacles to overcome.
This is just one part of having a baby with a cleft lip, there are other issues that come into play. But remember if a doctor ever says to you everything looks normal except…
Don’t let that EXCEPT define you. Don’t let it define your baby. Don’t let it define your experience. That EXCEPT will make you stronger. It will make you more confident. It will make you a better parent.