My husband and I have two beautiful kiddos, and tried for a few years to conceive another child. After many months of failed attempts, several visits to the doctor, many tests, tracking ovulation and all of that...we believed we couldn't get pregnant, and without explanation. The first two were very quickly conceived so we were left scratching our heads. We stopped using birth control of any kind and just decided to let whatever happen... happen. Fast forward NINE YEARS, we were going out of town and I wasn't feeling quite right. I felt pregnant, and sick. I had felt this way many times before and taken many pregnancy tests only for them to come back negative. I don't know what made me take the test, but I did, and wouldn't you know - I was pregnant! Mr. Moo was a healthy baby, or at least that's what the sonographer told us. I had my 20 week scan done at the peak of the pandemic, so it wasn't routine. I couldn't see the baby at all because of the room we were in, and by some fortunate twist my husband was allowed to be there (we've read many stories of partners not being allowed in.) I just remember the scan taking forever, well over an hour. To top it off, the sonogram was really uncomfortable. The tech was pushing really hard and I didn't know why, I just wanted to know our baby was healthy and be able to leave. When it was finally over, we walked out with a "Congratulations! Everything looks great, you have a very healthy baby boy!" Two days later, we received a phone call. It was the genetics office calling because they saw "something concerning" and wanted us to have another ultrasound, at a different facility, with special doctors. They wanted to do a genetic workup, and "discuss our options." I finally asked, "Do you know what you're looking for?" "Oh, I'm sorry!" the nurse replied, "A cleft lip and possibly a cleft palate." The news felt like it stopped time. Then the questions came. Mostly, what did we do wrong? What does repair look like? Quality of life? Was their co-conditions? It was like a flood. We just had so many questions. We did the genetic workup, and we were told there was no reason they could see that if Mr. Moo did in fact have a cleft - they had no idea what caused it. It just happened, and long before I even knew I was pregnant. We then were taken back to a room with a sonogram tech, and we had a level 2 sonogram that was reviewed by a doctor, and she and the genetics team, and cleft team came into the room to confirm the diagnosis. The baby for sure had a unilateral cleft, but we wouldn't know about the palate until he was born. Mr. Moo was born with an incomplete bilateral cleft lip and palate.
The same day of the level 2 sonogram, I was introduced to the Cleft Team coordinator, given her name and direct number, and she reached out to me a few times to ask me if I had any questions and how I was doing. I purposely avoided looking too much on social media, something I now regret deeply. I didn't want to look into the "what-ifs" because one night I couldn't sleep and I got on Google and read a lot of terrible stories and it gave me horrible anxiety. There are known co-conditions that sometimes go hand in hand with clefts, but unless I wanted to endure further testing (which I was adamant about not wanting,) there was no way to know until the baby was born if that was something that we even needed to think about. If I could go back and do it again, I would seek out cleft groups on FB, and seek out other cleft families on Instagram. I have done that now, and it's a wonderful community! You can follow hashtags on Instagram, so look for the hashtags #cleftlip #cleftpalate #cleftjourney #cleftcutie #cleftstrong #cleftproud and then follow the ones you like! I also have a good friend whose daughters have Pierre Robins Sequence, a type of cleft palate. After I had some time to really mentally prepare, I called and talked to her and asked her if she could help me understand how to prepare for a cleft baby. What bottles would I need, any special clothing, devices, if she had any advice, etc.. She was quite helpful! She told me about Dr. Brown Specialty Feeding Bottles, and some of the other bottles, (Pigeon, Haberman...) and how cleft babies sometimes have a hard time getting the hang of eating, so they might need a feeding tube, (Mr. Moo didn't need a feeding tube.) She told me to think about pj's with snaps or zippers that the medical team could easily access the feet and neck if there was an extended stay at the hospital for feeding issues, or even jaundice and things a lot of babies experience. Her best advice, however, was to take lots of pictures and document our journey. We have done that, and I'm so glad she advised us of that!
My advice would be: take it one day at a time. Grieving is normal, allow yourself to do so. That being said, don't forget to celebrate your pregnancy, and your baby! Write your questions down, and don't be afraid to ask them. Ask other cleft families, doctors, cleft teams, SLP's anyone who might be able to help you or point you in the right direction. Don't beat yourself up! Please don't blame yourself for your babies cleft(s). Take other peoples comments about clefts and their past experiences with a grain of salt. (You know, the aunt with a friend who had a cleft 20 years ago?) The way that clefts are handled today is much different than even 10 years ago! 10 years from now it will be different still. People are most likely going to say things to you that are offensive, and it's because they don't know that it's offensive. For example, calling a cleft lip a "harelip" or telling you how "easily it can be fixed." They most likely mean well, but may need some help understanding why those aren't the best things to say. There are lots of infographics for sharing on Instagram. Sharing a couple of those, and giving people grace will help both of you if you don't know what to say. Finally, it's easy to get sucked into a feeling of consensus. Meaning, if you see something a few times, try not to automatically apply it to you or your baby. Clefts are highly individualized, as are experiences, surgeries, and co-conditions. Research is great, just don't get carried away.
Below is a timeline of Mr. Moo’s observed symptoms, diagnosed conditions, and treatments and therapies.
Signs & Symptoms
Treatments & Therapies
Doctors & Specialists
Palate closure was a success!
On cleft palate
Cleft palate allows for food to go up the nose, lots of extra saliva, sometimes swallowing difficulties, and other times acid reflux.
On acid reflux
We have another son with GERD, so they could also be unrelated and due to family history. Mr. Moo doesn't have GERD, he has mild, occasional acid reflux.
On Pediatric Orthodontist Dr. Chuen Chiang
Dr. Chiang made Mr. Moo's NAM. She works tirelessly to help kids, and she has a winning personality to boot! She is incredibly kind, patient, meticulous, and helpful!
On ear tubes, preventively
A lot of kids have fluid build up, Mr. Moo had very little. The doctor said if all goes well this will be the only ear tubes Moo needs, when he outgrows them they won't place anymore.
On Speech Therapist (for feeding and speaking)
The speech therapist helped us get started feeding the baby, also recommended what cups to switch to before palate repair, and we will be meeting with her again soon to assess speech therapy needs.
On Pediatric Doctor
Our pediatrician is keeping tabs on Mr. Moo's development, height, weight, and head circumference. She is invaluable in her expertise and insights. The surgeon has deferred to her in these matters.
On Cleft lip and nostril closure
Mr. Moo's incomplete bilateral cleft lip was repaired when he was 3 months old. (One side was incomplete but had a seam, one side was complete. They repaired both sides as they would a bilateral cleft lip.)
On head circumference
They could be unrelated, but Mr. Moo's head size is in the 97 percentile, while his body was in the 85th. The doctors are monitoring the growth with the concern being possible hydrocephalus or a co-condition.
On Otolaryngologist/Cosmetic Surgeon, Dr. Brian Rubinstein
Dr. Rubinstein is incredible and I can't recommend him enough! He is the chief of Pediatric Otolaryngology-Head and Neck Surgery at Kaiser Permanente in Roseville, CA. He is also the assistant director of the Northern California Regional Craniofacial Panel for Kaiser Permanente. He started a nonprofit called Faces of Tomorrow where he and a crew of nurses and doctors go on medical missions around the world to help others with clefts and craniofacial deformities.