Waiting for lab results for yourself really freaking sucks. Waiting for lab results on your unborn child is cruel and unusual punishment.
The 3 weeks of waiting taught me that I have zero patience, and that we will believe what we want to believe. No news was good news, in my eyes. I had actually started believing they weren’t calling us because there was nothing abnormal found in the amniotic fluid.
Even after the cleft lip and palate diagnosis, you’d think I wouldn’t be so naïve.
I received the phone call from the genetic counselor while I was at work. I walked into a private room, and just listened. She revealed that the test came back abnormal and that Chris and I should come in to talk about the findings.
She had said that there was a chromosome deletion on the 9th chromosome. I had no idea what this could mean to us. Was Brody going to survive in utero? Were we going to be able to take him home from the hospital?
The next morning we met with the genetic counselor. She explained to us that Brody may have some developmental disabilities, epilepsy, low bone mass, facial deformities BUT there was no telling which line on the spectrum of any of those he would lay on.
Would our son ever be self-sufficient? Would he be able to walk?
We were then asked, after having this information, if we wanted to continue with the pregnancy.
Without hesitation we knew we wanted to continue the pregnancy. This new information didn’t change how we felt about our son and we certainly didn’t love him any less.
We focused on what we did know. We knew he had a cleft lip and (presumed) palate, so it was time to research as much as we could so we would know exactly how to care for him when he arrived.
Does anybody ever really know how to prepare for their first child, let alone a child with a cleft lip and palate as well as a chromosome deletion?
For parents just learning that their baby has cleft lip/palate, the Cleft Palate Foundation and Cleft Lip and Palate Foundation of Smiles helped me get through this difficult time. I highly recommend sticking to these resources rather than the overwhelming (and questionable) amount of information that you may come across if you’re just Googling the condition.
I want to congratulate both of you for the courage you had to create this blog and inform people. I’m also a mother of a special 10-year-old son, who was born with a cleft palate and a deletion on the 1st chromosome and a partial trisomy on the 16th chromosome. It’s a unique case. The only thing I want to say is that you are going to have a long and difficult path to walk. Nevertheless, every “barrier” that your son is going to overcome is going to be considered as a victory, as someone winning the lottery. You are going to value these victories as they were your own victories, much more “worthier” than the ones that a common baby gets. This is because you saw the enormous effort that your son had to do and all the intrinsic limitations he has, related to his deletion. However, all these battles you are going to fight aren’t important when your son’s cute and sweet face smiles at you and says: “I love you, mama!” or “I love you, papa!”. Congrats and thank you very much for your lovely blog.