Our sweet baby girl, Emma Lynne, was born in November 2024. She was born at 7:54am, and later that evening we found out from one of her nurses that she has a cleft palate. This was a surprise to us, as it was not detected on an ultrasound during my pregnancy. I actually vividly remember the ultrasound tech telling me (unprompted) that she did NOT have a cleft lip or palate during my 20 week anatomy scan. Only a few people close to me know this, but I was also born with a cleft palate. I hope to share our experience to help any other parents on this journey.

In the hospital

Read Emma Lynne’s birth story here. A nurse brought the cleft to our attention maybe 8 hours after EL was born. She does not have a cleft lip, only a cleft palate, and hers is a midline soft palate cleft.

The only difference in the hospital was her feeding. I chose to bottle feed both my kiddos. We met with the OT and pediatrician at Baylor Frisco on day 1 and they gave us Dr. Brown’s specialty feeding bottles with blue slow feeding discs. The OT taught us how to feed her using the blue discs to help regulate the speed of the milk, so that she just has to bite down on the nipple and the milk will come out. She also showed us how to place a finger under her chin to assist in her biting down. She advised us to feed her slightly tipped on her side, so that the milk would go into her cheek rather than straight back.

EL was born 9 lbs 6 oz and thankfully has had no issue feeding or gaining weight. A month later, we no longer have to feed her like this, but we did for the first few weeks. Occasionally milk will come out her nose, so keeping her upright for awhile after each feeding helps.

Dr. Brown’s specialty feeding baby bottle with blue discs are available at Target and Walmart.

The Pediatrician

When we first got the diagnosis, I was kind of scrambling with what to do. I didn’t know what kind of doctors I needed to contact or where to go, so I hope this blog posts helps you if you are in the same situation! You will go to the pediatrician a few days after your baby is born. They need to give you a referral to a specialty clinic. Ours did not do this at the first appointment (they should have!), so it was a bit delayed. We didn’t know any better, and it’s not a huge deal, but it could have eased some anxiety. At her next appointment our pediatrician put in the referral and I received a call from a hospital/clinic a week or two later.

Feeding Evaluation

Step 1 for us was a feeding evaluation. Someone from a children’s hospital in Dallas called me once they received the referral. I opted to do the feeding evaluation and meet the team in the same visit. They want to see babies sooner rather than later to make sure they are gaining weight, as that is generally the biggest issue with kiddos with clefts.

Meeting the Craniofacial team

The next step is meeting with a Craniofacial team. I brought EL to the Children’s Health Specialty Center in Dallas. First they took her weight, then took pictures in a full blown photography studio, then the feeding specialist came in. The whole appointment was over 3 hours long. I had to bring her hungry so the feeding specialist could observe her eating and see how long it took to finish a bottle.

After the observation, she suggested we move up to the level 2 nipple even though she was about a month old, and that definitely helped with the speed of her feedings. She was taking around 20 minutes to an hour at first. This sped it up to around 10 minutes! They also gave me a bunch of bottles, nipples, and blue discs so don’t be afraid to ask for more – they are free!

After meeting with the feeding specialist, the PA-C came in, who I happened to know through mutual friends in college! She reassured me I was in good hands and gave suggestions on surgeons. She answered a lot of questions and explained some of the process. I am very grateful to have that connection from A&M.

Weight Check

We went back 2 weeks later for a weight check. The main concern in babies with clefts is if they are unable to feed well they may not gain weight properly. However, EL was born 9 lbs. 6 oz. and has had no problem gaining weight – she was in the 75th percentile for weight her first month of life! Now at 4 months she is in the 59th percentile. We also met with another feeding specialist at this appointment and had pictures taken again.

Meeting with the surgeon

We met with the surgeon when EL was 2 months old. It was another 3 hour long meeting, where the feeding specialist came in first, then the surgeon. It all seems pretty straightforward. They scheduled her surgery at this appointment for when she is 9 months old.

ENT & Audiology

I met with ENT & Audiology when EL was 4 months old. This appointment was to determine if EL needs tubes in her ears, because if so, they will do it during her palate repair surgery. She has not had any ear infections so far, but the surgeon said that most of the kids end up getting tubes put in.

At Audiology they measured fluid in her ears, but were not able to do the hearing test because of this. We had been exposed to someone who was sick prior to this appointment, so she was a bit stuffy, so we have to go back later and get tested again. Too bad we can’t get the copay back…

Meeting with the ENT went well, she was very kind and knowledgeable. It seems like a decision we don’t have to make yet, and can even decide a week prior to her surgery. They did put us on the books to hold our spot just in case. So basically this appointment was inconclusive and we have to go again later.

Surgery

The cleft palate repair will take place when EL is 9 months old. It should be a one night stay in the hospital. The surgery takes about 3 hours, which definitely makes me nervous!! I will update this post after our surgery with more details.

Starting solids

We did baby lead weaning with Jett, but our team advised against it for EL since food could get stuck. They advised us to puree everything and spoon feed instead. We will start introducing solids around 6 months.

Support

I joined a local Facebook group of other moms who have kiddos with clefts. I am in DFW, but search Facebook groups in your local area. This group was great to search surgeons and ask questions from people who have gone through the same thing. It was reassuring to hear the surgeon and clinic we were referred to is highly regarded by other moms. Obviously if you are uncomfortable at any point with your team, know that you can interview other hospitals and surgeons, but I feel confident so far that we are in good hands.

The daughter of the owner of the bridal shop I bought my wedding dress at was born with a cleft lip and palate, and has a business called Stitches by Charlotte. She sent me one of her dolls and I wanted to share with other families! She sews them herself and it comes with a cute little kit to add stitches so your child can match their doll. How sweet is that?! Get yours here!

Having a cleft palate myself, I have first hand experience of what she is going to go through. I obviously do not remember the surgeries because I was just a baby, but I do remember having to go to speech therapy and feeling a little different with the way I talked as a kid. I would be pulled out of school to go to appointments, and kids would ask where I was going. I never wanted to tell them and felt so weird about it. No one wants to feel different. Other kids would make comments about the way I talked, and I still remember some kids telling me I sounded weird. I hope I can teach my baby girl to be confident in the way God made her and I hope to find the best care for her like my parents did for me. This is a part of our story, and we are on this journey together!

We would appreciate your prayers leading up to the surgery, as going under anesthesia is very nerve racking as a parent, especially for a little baby. Please be praying for the team, the surgeon, and for our family as August approaches. If you are going through this and have any questions, feel free to reach out!