Baby, cleft, Motherhood, pregnancy

A Cleft Lip At The Ultrasound – Our Birth Defect Story

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.

What did this mean for us? We 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 into 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 of 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.

Wondering About The Steroid…

The reason I was on a steroid for a couple of months was due to my adrenal disease. The doctor said my disease could impact the baby’s development if I passed it on. 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

cleft-lip-at-ultrasoundWith 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 of 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.

The Results

After the ultrasound, we were escorted to a room and waited 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. She said 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 came to a semi-better place. 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 Aftermath

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 a 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. Since we both came from work, we had to drive separately. I was disappointed about driving 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 overwhelmed.

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 a while, my husband came upstairs and I told him we needed to name the baby.

Naming Our Son

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 it felt urgent to come up with a name ASAP.

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

cleft-lip-at-ultrasoundOnly a cleft lip can be diagnosed via ultrasound. It is very rare to diagnosis the palate without an MRI. Statistically, if you have a cleft lip, you are likely to also have cleft palate.

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. Each ultrasound brought a bit of stress, but I won’t lie–the extra medical attention helped my anxiety levels. I liked feeling like we were on top of things.

cleftAt 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 be intact.

Growth & Induction

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! I don’t know if anything impacted his growth–I think I carry small babies (I am only 5’2 myself!)

At birth, we discovered my son only had a cleft lip. It was such a relief. 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.

In an effort to reassure me, some people reminded me constantly that “at least it wasn’t ____.”

Or “at least surgery can fix it.”

Or “just be glad that we have the medical technology to help nowadays.” Many dismissive reminders to be grateful.cleft-newborn

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 are worried about potential syndromes. Some wonder what it’s like to be a parent of a child with special needs.

Be Supportive

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. They were just trying to help, but I wish they had 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.


Holly Lee

I'm Holly and I'm the mom of two awesome young boys with a girl due summer 2020. We have been cloth diapering for 6 years. My family and I live in Minnesota with our dog, Ruby, and cat, Gherkin. Outside of Rocking the Cloth, I am also a middle school teacher. Thank you for visiting Rocking the Cloth--feel free to email me at holly@rockingthecloth.com if you have any questions or concerns. I'd love to help!

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  1. RandalvS says:

    Your story immediately caught my attention. It is fascinating to read somebody’s personal testimony about their experience. This is a very insightful post and helpful. It takes you into the complex and sometimes scary world of parenthood. Just to think about all the various fears we are faced with when dealing with challenges regarding our children. I personally did not have to deal with the same type of challenge you are describing, but I am sure that parents experiencing the same issues will be helped by this article.  Eli is an amazing biblical name with lots of significance. Thank you for sharing your story. My prayers are for you on your journey.

    1. Holly Lee says:

      Thank you! 🙂

  2. Kylie says:

    Hi Holly, I can feel your feelings from here. I am also a mother with 1 baby. I know it’s not easy when you get cleft lip diagnosis on your baby. However, I feel you are a strong mother. You, still do the best for your baby. Apart from that, you also have an amazingly great doctor, which from ultrasounds can take accurate verdicts. But above all, the most important thing is that your baby is healthy. By the way, how is your baby’s weight now? Is the development good?

    And for cleft lip, I hope you don’t need to worry too much because surgery alone can restore your baby’s handsomeness!

    1. Holly Lee says:

      Hi Kylie,

      My son is 2.5 now, so surgery is long gone (though he may have a revision surgery at some point). He was handsome before surgery, too. They are born perfect, even if society doesn’t see them that way.

      He is doing just fine! Very healthy and normal toddler.

  3. Juan Saladin says:

    I’m father of two baby girls and the nightmare of a born defect was always somehow in my mind during their mother’s pregnancy.

    I’m glad Eli is doing great and please don’t forget you’ve been blessed. Thanks for sharing your experience in order to get everyone going through this or any similar process to understand the experience.

    you’ve been very generous by linking-out to Operation Smile site.  I’m glad to see diverse motivations actually delivering either results or inspirational material to get them and support others.

    It would be great if you could share a post in regard to your experience with early non-invasive screening test (MaterniT21) as my wife and I are planning to get the last trying on getting a baby boy by mid 2020. 

    Thanks for your post and I wish to you, Eli and your entire family a very happy live together!

    1. Holly Lee says:

      I have been blessed beyond measure! Thanks Juan. 🙂

  4. Kell says:

    I’m really sorry you had to go through all that. I was touched. I just got married, and now I’m beginning to ponder about all this after going through your article.

    It’s surprising to know that what causes orofacial clefts among most infants are unknown. To some children because of changes in their genes. Although in some cases is said to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy.

    Truly, the effect it is on parents who are diagnosed of this is great looking at the dreams and plans they have for their baby. That’s why just like you pointed out, support and prayer needs to be given to anyone experiencing this instead of acting in a way that may seem hurtful. And I’m glad it was only a cleft lip and nothing else when you gave birth to your son.

    This indeed is really an encouragement and support to whosoever is diagnosed of clefts.

    1. Holly Lee says:

      Thank you for your kind words, Kell.

  5. Kozakiv says:

    It is not easy for you to go through that great experience. You had the strength and faith to overcome all difficulties and to move on through life. Prayer and faith in God can greatly help anyone in need. Life is full obstacles and struggles. Only strong people in spirit manage to overcome all the difficulties that life brings.

    1. Holly Lee says:

      Thank you!

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