One of the scariest days of my life was right around this time (Thanksgiving) three years ago. I was pregnant with my second child, and we had our anatomy scan which revealed a cleft lip at the ultrasound.
I knew so little about cleft lips. I remember watching infomercials for Operation Smile or something similar late at night as a child. I associated cleft lips with third world countries where people may not have great access to prenatal care.
It didn’t take long for me to realize how ignorant I was.
I want to share our story about our cleft diagnosis here because I’m hoping it can be an encouragement to other families that just received a cleft diagnosis.
My Health History
When many people think of their 20-week ultrasound, they consider the ultrasound where they get to find out if they’re having a boy or a girl, and they are excited about that. Some people even just consider it “the gender ultrasound” because they just aren’t worried about health issues.
Going in to the anatomy scan, I was nervous. I am just a worry wort in general, and I figured I believed deep down everything would be okay, but I have a tendency to worry about the worst-case scenario. I suffer from some anxiety that tends to heighten when pregnant.
We already knew the sex of the baby (boy) because we had done an early non-invasive screening test (MaterniT21). I have an adrenal disease that had me on dexamethasone (a steroid) for the first couple months of pregnancy until we found out the sex of the baby. The idea was if it was a boy, I would not need to take the steroid. If it was a girl, I would continue. But anyway, since we already knew we were having a boy, that kind of took the fun part out of this ultrasound.
The reason I was on a steroid for a couple months was due to my adrenal disease. They were worried that it may negatively impact development of a girl if I were to pass this disease on to the baby. It was a small chance that could happen (both parents have to be carriers of the gene to pass on the condition–it is a 1 in 8 chance if both parents have the gene, and nearly zero percent chance if only one parent has the gene). I myself have a very mild “non-classic” form of the disease, so it does not really impact me very much.
Prescribing dexamethasone is the common course of treatment for people with my condition until you are able to find out if the baby is a boy or a girl. With my first child (also a boy), I was talked into doing a CVS procedure due to insurance reasons, so we also found out the sex early with him, too. I was not willing to do a CVS the second time, so I paid out-of-pocket for the MaterniT21.
However, my husband is not a carrier of the gene, so all along I have not really needed to take a steroid during pregnancy. It took two pregnancies to get the full scope of how I should handle pregnancy with my condition.
The Anatomy Scan
With a glimpse into my health history, you may now understand why I was a little nervous going into the anatomy scan. Still, I kept reassuring myself that I was overreacting to my feelings and that certainly, everything would be okay.
I went to work in the morning that day, and then left after a couple hours to meet my husband for lunch at Perkins prior to the appointment at 1pm or so. I told my husband how nervous I was, and he did his best to reassure me.
Because of my health history, we had a level 2 ultrasound at Maternal-Fetal medicine (MFM–the high risk OBs). The ultrasound tech was taking pictures for the doctor, and let us know when things looked good. Towards the end, the tech said she just wanted to get a few more pics of something for the doctor. She didn’t elaborate as to what she was looking for, but immediately I got a sinking feeling something was off.
After the ultrasound, we were escorted to a room where we were to wait for the doctor. My husband said he didn’t think anything seemed off about that and that he was sure it was fine.
We waited for what seemed like an eternity.
Finally, the doctor came in. Actually, two. When I saw two doctors, my anxiety went into overdrive.
The doctor was clearly a little nervous. She told us that they found a cleft lip on the scan.
My heart was beating out of my chest. The thought of a cleft hadn’t even crossed my mind, I barely knew what it was!
I started crying and asking if it was because of something I did. I did not link it to the steroid at this time. Even now, we can never be sure that it actually was the steroid–I’ll never know. Clefts are a known side effect of dexamethasone during pregnancy, so it’s definitely possible. But isolated clefts usually have no known cause, so I’ll never know for sure.
The doctor reassured me that I probably didn’t do anything to cause this. She started to explain more about the condition and that it could be benign or it could be linked to several syndromes. I started asking some questions I don’t even remember now in-between bouts of crying.
Towards the end of the meeting, I finally came to a semi-better place when I talked to the doctor about the odds (70%) of this being isolated and not part of anything bigger, and that it would be fixed with some surgeries, and then we would move on with our lives.
However, this was honestly one of the HARDEST days of my life. I recognize now that a cleft diagnosis is far from the worst thing that can happen to you. However, at the moment where you first discover it, it is heartbreaking–especially when you know so little about clefts! The baby you hoped for and prayed over was going to be faced with some huge difficulties.
The doctor gave us some time after the appointment to just sit in the room alone and process. Thankfully, my husband was my rock. I am so thankful that he has the calm and steady personality that my anxious-self needs. Of course, he had his own worries, but he was able to be the strong one.
Eventually, we felt ready to go. We drove separately since we both came from work, and I was disappointed about having to drive myself home.
We were at MFM for so long that it was now rush hour and I was in downtown Minneapolis. We live in the southern suburbs so I knew it was going to be quite the drive.
Right as I’m trying to merge onto the highway, I get a call from my son’s daycare–he was laying in the office with a 102 fever and they needed me to get him right away. I was just so overwhelmed at that moment.
I finally got down to daycare probably 40 minutes later and got him picked up. Then I felt ready to call my mom and tell her what happened at the appointment. I ended up just sobbing again on the phone. I don’t remember much of what she said to me other than reassuring me we would get it all figured out.
When I got home, my husband took care of my son and I went to go lay down. I just laid there staring at the ceiling and doing some more processing. After awhile, my husband came upstairs and I told him we needed to name the baby.
It’s difficult to explain why all of a sudden I needed us to commit to a name, but I did. There was something about receiving this diagnosis that made it feel sadder to me that we hadn’t decided on a name to call him yet. Again, I can’t really explain why, but having a name all of a sudden felt urgent.
I told my husband I wanted to name him Elijah and call him Eli for short. He agreed and that was that! We started calling him Eli from that day forward.
The Rest of the Pregnancy
One common complication of cleft lip/palate is that fluid levels get too high due to the problem of swallowing fluid. The baby can’t swallow as much with a cleft palate.
We started doing growth ultrasounds at MFM every 2 weeks, and then eventually weekly to monitor fluid levels and growth. I was stressed out before each one, but I won’t lie–the extra medical attention did help my anxiety levels. I liked feeling like we were on top of things.
At one of our ultrasounds, the tech was able to get a picture where we could see the tooth buds. They were evenly spaced, which was a promising sign that the palate may not be impacted, or would be minorly impacted.
At 38 weeks, my growth ultrasound indicated that the growth had kind of leveled off and the doctors decided we were okay to wait one more week, but at 39 weeks they wanted to induce me.
The induction went well thankfully. He was born 6 lbs 10 oz, which was actually a half-pound heavier than my firstborn! So I don’t know if his growth was actually impacted–I think I carry small babies (I am only 5’2 myself!)
At birth, we were so relieved to discover my son only had a cleft lip. One of the most difficult parts of the cleft diagnosis was realizing I probably wouldn’t be able to breastfeed. However, with only a cleft lip and intact palate, breastfeeding was no difficulty. I felt so elated, joyful, and blessed when he was born.
What Do You Say?
I’ll share more about his surgery, future surgery, and appointments in another post. To end this post, I want to give some suggestions for how friends and family of people who received a cleft diagnosis at ultrasound can react.
I had some people, in an effort to reassure me, remind me constantly that “at least it wasn’t ____”, or “at least you can just get a surgery and be fixed”, or “just be glad that we have the medical technology to help nowadays”, and just all of these dismissive reminders to be grateful.
Yes, absolutely to all of those things above. However, parents that receive a cleft diagnosis, or ANY diagnosis at an anatomy scan go through a sort of grieving process. They had hopes and dreams for this child that they aren’t so sure about anymore. They’re worried that they might be part of the group that has syndromes associated with it. They wonder what it’s like to be a parent of a child with special needs.
There is so much running through their head, and they may be sharing it with you as a way to process and ask for some support or prayer. All you need to do is listen. You don’t need to act like this is the worst thing in the world or anything like that, but if you are a person that has never gone through something similar constantly reminding someone who is grieving a bit that it could be worse or this really isn’t so bad, it comes off as extremely dismissive and hurtful.
I had some people react this way to me. I know now this was their way of trying to comfort and help me, but what I really wish they had done was just given me a hug and offered to pray for us. Acknowledged they knew this was hard for us, and they would be there to listen.
It’s okay not to know what to say, but don’t try to rush people through their hurt by dismissing their VERY REAL fears. They will get there on their own eventually, just be their friend and listening ear right now.
Are you here because you are dealing with your own cleft diagnosis at ultrasound? Let me know in the comments–I would love to help be a support to you.