What to Expect When You’re Not Expecting: Your Baby Diagnosed with a Cleft Lip and Palate

Ilah Hopson completed  pre-nasal alveolar molding (PNAM) in less than 3 months.  She recently had her lip repaired (post operative pictures to follow).  Congratulations to another PNAM Graduate!

Ilah Hopson completed pre-nasal alveolar molding (PNAM) in less than 3 months. She recently had her lip repaired (post operative pictures to follow). Congratulations to another PNAM Graduate!

Pregnancy is a very exciting time for a family, from the moment you find out you’re pregnant, and to the day you learn the sex of your baby.  Until one day at an ultrasound appointment, the doctor informs you that your baby has a cleft lip/palate.  Your first thoughts are: What is that?  Is my baby going to live?  What did I do wrong?  What caused this?  Will I be able to breastfeed?  Your next reaction is to start Googling the condition on the internet, comparing your situation to other families.  Most commonly, you will see the more severe cases through pictures and stories from other parents.    That may have been your worst next step.  Not all babies are the same and during pregnancy, the last thing you need is more to worry about.

Not every family is fortunate to have an ultrasound; however, once you are informed of your baby’s cleft lip/palate, we highly encourage you to make a prenatal appointment with us.  As the coordinator for the Texas Cleft-Craniofacial team, my passion is to guide you through this process.  We will discuss the treatment plans, feeding techniques, and the importance of team care.  Proudly, we will become a part of each other’s family.  Through experience, we have found that those who are well informed of the condition prior to the arrival of their baby will experience decreased anxiety, ultimately providing the baby with emotional support to a healthier state.

Below is the Hopson family’s experience, as they have learned their daughter, Ilah, will be born with a cleft lip/palate.  A prenatal consultation provides hope for your unborn child.

“My first few months of pregnancy had been smooth sailing and when we went in for our 18 weeks ultrasound we were over the moon to find out that we were having a sweet little girl. Both of our families are outnumbered by boys so we just assumed ours would be a boy as well! We were riding high and so full of joy. A few days later we got a call from our midwife asking us to come in to go over the ultrasound. We were told it was completely routine; but of course, we knew something seemed off especially since we had an appointment scheduled a few days later. We got there and they performed the routine procedures and then the midwife came in. She told us that from the ultrasound pictures that were sent over, it looked like our baby may have a cleft lip and possibly palate. We were completely blindsided. The thought had never crossed our minds. How could they tell so early? I remember sitting in silence trying to process everything…and then the tears started flowing. All I could think of was, “What did I do wrong?” In my mind I had done everything right: I started taking folic acid before she was even conceived, I was eating extremely healthy, taking my vitamins, working out, I completely cut out caffeine and here we were.

Of course we went home and “Googled”… we googled way too much. Then we started the phone calls to our family. Adam had to do the talking because I couldn’t get a word out without a complete meltdown. Our midwife recommended us to a fetal medicine doctor to confirm the cleft through a level 2 ultrasound, and that was the longest week of our lives. A part of me was still in denial because I caught myself thinking about the possibility of the technician mistaking it for a shadow. We went to our appointment and sure enough she had a unilateral cleft lip on her right side and we were uncertain if her palate was affected. My heart sunk at the thought of my tiny baby having to get surgery. My heart ached at the thought of not being able to breastfeed her. Of course I cried again. We had a very thorough ultrasound to make sure everything else was ok. We had a perfectly healthy baby and for that we felt so fortunate.

The Hopson family at one of the dental visits for PNAM (pre-nasal alveolar molding).

The Hopson family at one of the dental visits for PNAM (pre-nasal alveolar molding).

Our fetal medicine doctor recommended us to the UT medical cleft team and we scheduled a prenatal consultation as soon as we could. My husband called Leanne, and from the beginning we knew we were in the right hands. She was so friendly and helpful over the phone and we were finding ourselves getting excited for our consultation. We received a letter confirming our appointment and I remember reading, “Congratulations on your baby girl!” and it tugged at my heart strings that the letter was so personal. We met with Leanne and Dr. T and we were so happy to be fully informed; there’s only so much you can read up on the internet! It gave us great peace of mind that they were so knowledgeable and so patient in explaining everything. It was such a huge relief to have a plan of action and to have a time frame of what to expect.

Initially, the news was hard to accept. The unknown was hard to accept. We didn’t know about clefts and we didn’t know anyone with a cleft. It took a while for me to accept that it was nothing that I did wrong and neither Adam, or I, were to blame. Our love and want for this baby girl never wavered. We would love her no matter what, and to us, she was our perfect little lady. How lucky and blessed were WE to have her as our daughter?! God had designed this perfect little human exactly how he intended her to be and He chose us to love her. Thanks to our families, we have the love and support to overcome this minor bump in the road…this parenting fun has only just begun! Our families have been nothing but supportive and our precious baby could not be born into more loving arms. We are truly blessed.