Finding out about Liam’s cleft

The day of my 20 week anatomy scan.

We headed to the doctors office that afternoon, so excited to see our baby again. To see how much he weighed. On the way there my husband and I both made bets on how much he would weigh. I thought this was going to be just another routine appointment… check my weight, take my vitals, have an ultrasound, talk to the doctor and then go to lunch afterwards. Boy was I wrong. This was FAR from a normal visit.

During my ultrasound they were measuring his stomach, head, confirmed he was in fact a boy. But after 45 minutes I wondered what was taking so long. The woman said to me “just a few more shots of his face and then you are all set” I didn’t think anything of it. I thought he was just being stubborn as always during our ultrasounds. She finally got what she needed and sat us back in our room.

It took longer than usual for my midwife to come in. The second she walked in I knew something was wrong. By the way she looked at me, the way she said “how are we today?”. She went over all the measurements, told us how much he weighed. Then, I will never ever forget it. “Your baby will need surgery, your baby has a cleft lip and palate” I’m almost positive she said something else after that but I couldn’t tell you for the life of me what she said. I blacked out, my entire body went numb. I looked across the room at my husband and just lost it. I felt my heart break into millions of pieces. My midwife stepped out into the hallway and gave us a minute to get our emotions together.

How could this happen? It took us an entire year of fertility treatments to get pregnant and now this? Why us? What did I do wrong? Did I cause this? Did the fertility treatments cause this? Is he going to be okay? How will this affect his life? How will he eat? Will he need a feeding tube? Will he be bullied? Will others look at him differently? How can we put our baby through all these surgeries?

I fell into my husbands arms, uncontrollably crying. Trying to catch my breath. I felt like it was my fault. I did this to our baby.

My midwife came back in, gave me a huge hug. She assured us that it was nothing I did. I still couldn’t help but blame myself. She then asked if we have ever met someone with a cleft lip before. We said no. She lifted her head to the ceiling and said “look at my nose and lip, I was born with a cleft lip and you had no idea until just now”. I couldn’t believe it! There could not have been a better person in the world to break this news to us. After asking her a million and one questions, she told us that they were referring me to a specialist team at MUSC in Charleston, SC 2 hours away. That they would do a more advance ultrasound and go over the severity with us. That I would have to deliver there.

I cried and cried and cried all night long. I just couldn’t believe it. It felt like a dream. We were sad, angry, confused, scared, worried.

The very next day, we took that long 2 hour drive to MUSC. We were scheduled to get an ultrasound and to meet with the “cleft team”. What’s a cleft team? We had no idea. A cleft team includes specialists from Audiology, Genetics, Oral and Maxillofacial Surgery, Orthodontics, Pediatrics, Dentistry, Plastic and Reconstruction Surgery and Speech Pathologist. The doctor talked to us about “alternative options” – that wasn’t even a thought for us. We were keeping this baby no matter what and nothing would change our mind. We would love him no matter what. It was less than 24 hours ago we just found out and now we are meeting with a surgeon and talking about future surgeries. I was so overwhelmed. They went over all the complications and risks that comes with cleft lip and palate. They explained to us that he wouldn’t have suction, which meant I couldn’t breastfeed like I planned. This broke my heart. They gave us two “Specialty Feeding” bottles, a packet full of information and the timeline of all his surgeries. Explained to us about the taping that we would have to use and the NAM that they recommended to help with his palate.

We quickly learned that this was not just a “cosmetic fix” like everyone kept telling us. This was going to affect his life years and years down the road, until the age of around 20 years old. Maybe even longer.

Do we tell people? Do we keep it a secret? We had no idea how to go about this. We told our family that weekend and a couple close friends but we kept it quiet from everyone else. I found myself getting protective over the topic when it was brought up. I couldn’t talk about it without crying. I didn’t want to be told “I’m sorry”. I didn’t want the sympathy. I didn’t want the questions. I didn’t want to talk about it at all. It took about a good month and half for us to actually come to grips with this. To finally accept the fact that life will be a little bit harder for our little guy (and us). Eventually I found myself upset because I felt that I couldn’t share our ultrasound pictures anymore because no one knew. We decided that it was time to post something on Facebook and Instagram about it, to open up about it. I was TERRIFIED to do this. I was terrified of the comments I would get. Let me tell you, we were SO overwhelmed with the love we received. We knew we were going to have support but being on our own away from immediate family we knew that the support could only go so far. I was getting messages from strangers that I have never met before. They were sharing their stories with me, giving me advice, reassuring me that everything we were feeling was normal.

After coping with all the emotions that one can possibly feel, we knew that we would get through this difficult journey with the help of our family, friends and the wonderful cleft community.

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