On January 4, 2016, my life was forever changed by these simple and purposely upbeat words: “soooo looks like baby has a bit of a cleft.”
My third and final baby was born with a surprise bilateral cleft lip and palate. One that had gone undiagnosed through countless ultrasounds, including an extremely detailed genetic ultrasound due to my “advanced age” of 36.
Because of this ultrasound, I had no reason to suspect that there was anything wrong with my baby.
I can remember laying there stunned, staring at the wall and not speaking to anyone. There were so many panicked thoughts running through my head and at the same time my mind was completely blank.
All I could picture at that moment were images of cleft children a nurse had shown us in school in the second grade.
A fellow student
I remember being very scared of the pictures and not wanting to look at them. I have actually remembered this assembly at different times throughout my life and wondered who thought it was a good idea to show 7-year-olds such graphic photos. But now MY baby was the graphic photo and I was terrified to look at him.
I Was Scared to Look at my Baby
I was so terrified to see what he looked like. Those images from elementary school were running through my mind while baby Wyatt lay on my chest. I kept rubbing his back and kissing the top of his little head, but I couldn’t look at him.
It took me probably close to twenty minutes to finally look down at his sweet face and of course, I was instantly in love, but I was also so sad for him.
Without knowing anything about medical treatments for clefts I knew that this little guys’ journey was going to be much tougher than my other kids.
I Couldn’t Breastfeed
The first cleft related issue that broke my heart was that Wyatt was unable to nurse. He has a very wide and deep cleft of the hard and soft palate so he had absolutely no suction. The nurses did have me attempt to nurse but it was impossible.
I had nursed my older two children until they were close to two and I was so looking forward to this last nursing journey. Wyatt was a bit of a surprise baby and I was so happy when I found out I would have one last baby to have that special bonding experience with.
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The nurses brought me the breast pump the following morning and I immediately started pumping every two hours. My colostrum came pretty quickly so we were able to start trying to feed him with Medela Special Needs Bottle (commonly referred to as the Haberman).
Because the hospital was not a high-risk hospital none of the nurses were trained with this bottle and had to read the directions so we could figure out how to use it.
Fortunately, he did take to it fairly quickly, but unfortunately, I was not properly shown how to correctly feed him. More on that subject later.
My newborn has a tooth
When Wyatt was seven days old he suddenly started having feeding issues and screaming every time I put the bottle in his mouth. I began to notice something white starting to appear on his gum notch, right where his bottle nipple would rest during feedings. It kept getting bigger and bigger until I finally realized it was a tooth!
My one-week old baby had his first tooth and due to its location, it was making feeding painful for him. I called his Pediatrician but it was the weekend and I got a call back from an on-call doctor who really didn’t seem to understand what I was telling her.
We hadn’t met with our cleft team yet because of an insurance issue (we couldn’t get the referral to go through because my medical group reported Wyatt’s birthdate wrong and it took over two weeks to fix) so I had no other doctor to call.
This was a major low point for me. I felt so helpless because no one, including me, knew how to help my baby.
The tooth kept getting bigger and bigger until it was very loose. It finally came out when Wyatt knocked it out himself when he was flailing his little arms around. After the tooth came out things went back to normal again for a bit, but then he started losing weight.
On a side-note, my Pediatrician was so inexperienced with clefts that he thought Wyatt’s little newborn tooth was going to go in medical journals! When I finally met with the cleft team I found out it is very common for cleft babies to have neo-natal teeth.
Even though clefts are one of the most common birth defects, most Pediatricians are not very educated about them. I received a lot of well-meaning but very incorrect information from several Pediatricians in Wyatt’s first year. I learned to take everything they said with a grain of salt and to only really follow what our surgeon said.
My Baby Won’t Stop Screaming
Suddenly Wyatt was taking almost an hour to eat a couple of ounces and he was still not finishing his bottle. He would fall asleep at every feeding and wake up starving.
We had biweekly check-ins at his Pediatrician’s office and Wyatt was continuing to lose weight. I felt so helpless but things finally changed when we met our cleft team at UC Davis when Wyatt was three weeks old.
We met with the feeding specialist first and explained all the issues we were having. She had me show her how I was feeding him and quickly solved the problem! It was so incredibly simple!
It was infuriating that no other doctor or nurse had been able to figure out what was going on before this visit. My poor baby had been starving for two weeks just because I wasn’t using the bottle properly!
Something that is really important to know is that a single feeding should take NO LONGER than 20 minutes. If it does, your baby will burn more calories trying to eat, resulting in hunger and weight loss. This is exactly what happened to Wyatt.
I didn’t realize how much I had to squeeze the bottle nipple for him because he was able to get the milk out himself without me squeezing it. In fact, when he was able to get the milk out himself I was so proud of him and I thought it was a huge accomplishment.
Turns out that was the root of the problem. Once our wonderful feeding specialist showed me how to use the bottle the correct way we never had another issue. If your baby is taking longer than 20 minutes to eat, please contact your feeding specialist for help!
The First Few Months
Wyatt’s first few months were a blur of pumping, doctors’ appointments and lots of jealousy fueled aggression from my older kids who were 3 and 7 at the time. My breast pump became my worst enemy and I dreamed of the day I could take a baseball bat to it.
We were at the doctor’s a lot for check-ins and to have his NAM adjusted (you can read more about that in a separate post). While I was happy we had such an amazing team to see, going so often and traveling 80 miles roundtrip was tiring and hard with two other children to take care of.
My bigger kids (Colton and Emma) spent those first three months fighting and yelling constantly and just overall being horrible. They were very sweet to baby Wyatt but they were not sweet to me. Caring for Wyatt combined with having to pump, took up so much of my time.
Eventually, Colton and Emma adjusted and things got better. I would say that by the time Wyatt was 3-4 months old, Colton and Emma’s behavior was back to normal.
In my experience, the first year was the toughest. We were fortunate that Wyatt did not have any other issues or syndromes that are common with clefts.
Make sure to follow up with my other posts that will discuss surgeries, the NAM device and tips and tricks to help make your life a little bit easier.
Please leave me a comment if you have any questions! I love hearing from and learning from other cleft parents.
P.S. Check out these adorable personalized #cleftstrong shirts from Oh Silly Baby on Etsy.