Megan and I met about 7 years ago when she brought her then one year old daughter to take Santa and Me pictures at my husband’s photography studio. It was actually my husband’s first year doing Santa pictures and Megan and her family have been one of our loyal patrons ever since.
As such, I’ve had the privilege of watching her daughter grow from a sweet little toddler to a bright and lovely six-year-old. Then three years ago, they introduced us to the newest addition to their family, Carson.
We always chat briefly when they come to get their pictures taken. Last year Megan mentioned a AAC (augmentative and alternative communication) device her son uses. Ironically it was the same one I had been looking into. But I had questions and wasn’t sure if it would be the proper fit for my son, Caleb. Megan was more than happy to meet with me and share her experience and show me how the device worked.
We wound up meeting around spring time. In addition to sharing her experience with AAC and other resources, she shared a little bit of her story. As soon as I heard it, I knew it needed to be shared. Because I realized how much of what she’s going through I’d forgotten. It also made me curious to know how she overcame those struggles.
So near the end of summer, Megan and I met at a national casual bakery cafe where I got to hear the rest of her story.
Lunch at Mama Rojas
Megan was having a get-together with her mom for some mother/daughter time. She was seven months pregnant with her second child and excited that in a few short months she and her husband would be a family of four.
She was meeting her mother for lunch at Mama Rojas a local Mexican restaurant set in an idyllic location overlooking Lake Hefner. Just as she pulls into the parking lot she gets a phone call from her doctor about her ultrasound.
Although she understood the doctor’s words, she was shell-shocked. It wasn’t until she told her mother what the doctor said, that the reality of the situation sank in and the worry kicked in.
How bad would the cleft be? She’d seen pictures, there were imagines in her head of babies who had cleft lips. What would her baby look like? If she were to probe deeper into her emotions, there may have been fears about how she would react to seeing her baby for the first time. But there were so many different feelings bombarding her mind simultaneously, it was too early to differentiate and delve into the various underlying fears. That will take years of unraveling.
Dealing with unknown
CDC statistics report 1 in every 1,600 babies is born with a cleft lip and a cleft palate whereas, only 1 in every 2,800 babies is born with only a cleft lip. Since there was a greater risk the baby may have both a cleft lip and a cleft palate, Megan was scheduled for a follow-up 4D ultrasound in two months.
It was an unusually long time to wait but that delay gave Megan time to continue to process the idea her baby may have a cleft lip and quite possibly a cleft palate as well.
Uncertainty…unknown is a recurring theme in Megan’s story. She always had to deal with not having all the answers. As someone who likes to plan, not knowing creates anxiety because one can’t prepare for the unknown.
The 4D ultrasound
One source of comfort during this time of uncertainty was the fact her mother was a nurse. Megan knew she could count on her for any help and support she needed. It was also reassuring to know her parents lived close by.
Nevertheless, when she went in for her 4D ultrasound on Jan 4th, she was nervous. Not necessarily about the cleft per se but the possibility the ultrasound may reveal other birth defects.
As hopeful as she was that the ultrasound would provide some much-needed clarity, it didn’t. She was so far along in her pregnancy that the baby was pretty cramped in his living quarters. This meant they couldn’t get a good picture of his palate, so the doctor couldn’t give a definitive answer about its condition. The 4D ultrasound only confirmed the baby had a cleft lip. Meaning Megan and her husband left the appointment just as uncertain as they arrived.
Being nervous about the birth
It goes without saying when she went for her scheduled induction on Feb 14th at 41 weeks gestation, Megan was dealing with various emotions. There was the excitement of finally delivering her baby and holding him for the first time. But there was also the fear of not knowing the size of his cleft lip and all the underlying worries that come with that. Finally, there were the uncertainty about his palate.
Thankfully, her doctor was very supportive. This was another source of comfort for Megan.
The doctor was very mindful of Megan’s concerns and worries about the baby. She made sure Megan’s birthing experience for Carson was the same as when she delivered her daughter three years earlier.
Seeing Carson for the first time
Carson came into the world weighing 8 lbs 2 ½ oz. He was born with a cleft lip but not a cleft palate.
Seeing Carson for the first time alleviated some of the anxiety Megan had about the size of his cleft. It looked different than what she had expected. It wasn’t as pronounced as she feared and it looked even better the next day when his face wasn’t swollen from being born.
The size of Carson’s cleft was another source of comfort for Megan. Had it been any bigger it would’ve required multiple surgeries, extending over long periods of time. This would’ve increased Carson’s chances of a lengthy stay in the NICU (neonatal intensive care unit).
Instead, she got to take Carson home with her after the standard two-day hospital stay.
Life with a newborn who had a cleft lip
Right away, Carson’s cleft posed some problems. First, his inability to latch on during nursing. Then his reflux. Needless to say, feeding was definitely a struggle.
This was especially frustrating for Megan because she had problems with her milk production with her daughter. But with Carson she didn’t have this problem. But unfortunately, he couldn’t latch on properly. It was so disappointing to have the milk production yet being unable to nurse.
Megan eventually resorted to pumping.
Surgery and recovery
Carson was 10 weeks old when he had surgery to repair his cleft lip. After surgery there was a 10-day recovery period. Carson wasn’t allowed to suck or have anything in his mouth including his pacifier during this time.
For newborn Carson, was had grown particularly fond of his pacifier, this was hard.
If recovering from surgery and having no pacifier wasn’t bad enough, Carson also had to wear a no-no pediatric arm immobilizer. This prevented him from picking at his stitches.
It’s never easy to see your child go through surgery but many times that’s just the beginning. There’s post operative care which can be more difficult because it lasts longer.
Post surgery, Carson had to be fed orally using a 6-inch tube fitted with a syringe. This made feedings longer and messier. In addition, since Carson was taking in more air with the tube feeding, it exasperated his reflux.
On top of which Carson was also dealing with the pain and discomfort of the surgery. All these factors increased his colic, making it a very stressful time for both Megan and her husband.
The 10 weeks seemed to stretch unending like the country roads Megan loved.
Statistically, 95% of babies born with a cleft lip (without a cleft palate) have no additional problems. It’s an isolated cleft and surgery is the end of their story. However, Megan didn’t know that for Carson this was just the beginning.