ACPA Family Services

Cleft-Craniofacial Community Stories

“How We Found Out”

How we found out we were having a son and that he was going to be born with a bilateral cleft lip and palate was nothing short of a surprise.  We went through the initial doctor visits and scheduled our first ultrasound at 17 weeks hoping to find out the sex of our baby. I made the appointment after my daughter got out of school so that she could be with us when we found out. All of us were excited and we went to the ultrasound with great expectations. Initially, everything was going as planned and then I saw the nurse’s face change, her back arched and she kept squinting at the screen and moving the device around.  She then stated that she was getting the doctor and would be back in a moment. I knew something was wrong. We all did. I felt like my entire body was on high alert and I could hear my own heartbeat. The next moments were dreamlike and feel as if the moment happened to someone else. The doctor did come in and he continued to look at the screen and not say a word. I could not bring myself to ask what was wrong even though I knew something was not right. The doctor turned the machine off and turned to all of us and said, “Well, good news first is that you are having a boy…but it appears that he is going to be born with a bilateral cleft lip and possible palate.”

No one  moved, no one breathed, not one word was said for what felt like an eternity. None of us knew what he had just said or what that even meant. He began explaining but I could not really focus and still just was not able to comprehend a great deal of what he was saying. I do however remember the doctor telling us that we were not too late in being able to schedule termination before we got too attached to this pregnancy and that after a few months we could try again to get pregnant and that pregnancy would most likely be without defects.

I was horrified! After believing we could not get pregnant and then having this baby growing inside of me and hearing his heartbeat, his heartbeat how could someone suggest such a thing?  I was so caught up in what was wrong I hadn’t even been able to process that we were having a baby boy. Was this doctor crazy? Too attached to this pregnancy?  I was attached the moment I got POSITIVE and the first time I heard this baby’s heartbeat…I was smitten with the child I was carrying. I wanted this child and hearing the word defect both hurt and angered me. I asked the doctor to leave because we needed some time alone. He left. Thank goodness for his sake.  And my own.

So there we were. In this dimly lit room lost in our own thoughts and turmoil. We grabbed each other and cried. All of us. My husband, daughter, and me.  I wanted to leave so we tried to compose ourselves and walk out of there. It was not the appointment I had hoped for.  There were no congratulations and the staff seemed to be avoiding eye contact and smiling at us with pity. I just wanted out.

Tani's newborn son

Tani’s newborn son

There was silence on the way home. Our phones were ringing and going to voicemail with questions from family and friends wanting to know the sex and how the appointment went.  We just could not talk to anyone. Going home was hard because all of us began looking up what a bilateral cleft lip and palate were. Once we finally realized what it was it just made it that much harder to figure everything out. There was so much information about feeding issues, swallowing issues, speech and language issues, surgeries, ear problems, etc.  It was overwhelming and daunting.  Caring for a child that was going to have to come into this world fighting the moment he was born scared me. I wondered if I could even take care of this baby and how I was going to take care of a baby that was going to need so much more than just a baby being born without all of these challenges.  Then I worried that my husband didn’t want this baby and might be considering the doctor’s advice on termination and I was even more fretful.

I called my husband and daughter out to the living room so we could all talk. I started crying and I told them that I know this baby is going to have its challenges but that terminating was not an option for me. I would be having this baby and I would be figuring it out. I wasn’t sure what the reaction would be and was scared it might not be what I wanted but my husband began crying and he told me that he was so happy to hear me say that because he already loved this baby and even though he knew it was my body and ultimately my decision, he really was scared I wasn’t going to want to have this baby.

Taping nasal stents prior to lip repair

Taping nasal stents prior to lip repair

My daughter (10 at that time) appeared confused.  She said she really didn’t understand what all the challenges were that this baby was going to have, but she didn’t really care. She told both of us that she believed this baby asked God to be put with our family because he knew that we would love him no matter what and that we would make sure this baby had the best doctors and the best care, so why would this baby want to be with any other family, except ours?

I stopped crying.  I really looked at my daughter (wise beyond her 10 years) and held onto those words. They really did make all the difference. Knowing what I know now, she was right.  He has been a blessing to all of us and I continue to try to live up to the fact that he chose us for a reason.  Not only am I his biggest fan, but I continue to be his biggest advocate.

After lip repair

After lip repair

 

Big sister and little brother

Big sister and little brother