What is a cleft lip and palate?
The following is from the Cleft Lip & Palate Association (CLAPA) Website:
A cleft lip can range from a little notch in the coloured part of the lip to a complete separation of the upper lip which can extend up and into the nose. This can affect one side of the mouth (unilateral) or both sides (bilateral), and can be complete (meaning the cleft goes up into the nose) or incomplete.
A cleft lip can also affect the gum where the teeth come through. Again, this can range from a small notch to a complete separation of the gum into two parts.
A cleft palate is a gap in the roof of the mouth. The back of the palate (towards the throat) is called the soft palate, and the front (towards the lips) is called the hard palate. A cleft can affect the soft palate or both the soft and hard palate.
What Causes cleft?
The following comes from the Cleft Lip & Palate Association (CLAPA) Website:
There is no one cause of cleft lip and/or palate. Research tells us it’s often caused by a combination of different genetic and environmental factors, but because of the huge number of factors involved it can be very difficult to narrow these down.
Genetics is all about things inherited from family members, like eye and hair colour. Sometimes there is a clear family link, other times it just happens as a ‘one off’.
Environmental factors mean things that happen just before or during pregnancy, like taking a certain medicine or how the baby starts growing in the womb.
Most of the time, a cleft is caused by genetic and environmental factors coming together in a way which can’t be predicted or prevented.
What are some challenges for babies born with cleft?
In some circumstances, cleft can be related to other chromosomal abnormalities, which would have other challenges beyond the cleft lip/palate after the baby is born. In isolated cases (which is what seems our little guy falls into), the challenges are often related to the cleft itself.
Breastfeeding: The first major issue is feeding. In the majority of cases, cleft babies won't be able to breastfeed because they are unable to create the suction necessary to take in enough milk. However, feeding our kiddo breastmilk is not out of the question and is the way we intend to go. Our doctors consider pumping and then feeding with specialty bottles the same as breastfeeding in this case. This is the area where Elizabeth felt the biggest sense of loss when we found out our little guy had cleft. She always pictured herself breastfeeding, especially her first child. While she's been up and down about it, we've come to a good place knowing that 1) breastfeeding is hard for everyone and at the very least it has helped us manage our expectations early on, and 2) Cory can equally participate in the feeding process which is going to be pretty wonderful.
Craniofacial challenges: From ultrasounds, it seems as though our kiddo has what can be considered a typical cleft. It goes from lip to nostril which means he'll likely have a flattened nostril on his left side where the cleft is. Because of the craniofacial defects, he'll have to have multiple surgeries and could cause dental challenges as his teeth come in. This is one of the issues that could be longer lasting and he may require more in depth orthodontic surgery into his teens.
Speech therapy: Because the defect affects his face and mouth, he'll likely have to start speech therapy pretty young going into his teens.
WHAT ARE THE TREATMENTS FOR CLEFT?
The most obvious treatment for cleft is surgery. We've been told that his first surgery will take place between 4-6 months (but probably closer to 6 months). Prior to that, he'll be receiving regular check-ups with the craniofacial surgery team, dentists, and feeding specialists. In some cases, he'll be fitted with a NAM which is kind of like a retainer that shapes the roof of his mouth in that timeframe pre-surgery. However, that depends on what the surgeons think will actually benefit him. We have yet to meet with the craniofacial team (we've had 2 rescheduled appointments), but we'll have more details moving forward.
That first surgery will likely be just the lip repair. Depending on the severity of the cleft, he'll have at least one more surgery in his first year, more if necessary.
From what I've learned from other parents and the medical professionals we've been meeting with, he'll have regular appointments throughout his first year and a half. After that, he'll have check-ups as his baby teeth and then his adult teeth come in and will likely start receiving speech therapy early on as well (not sure how early yet).
That said, there's a lot that goes into treating cleft. It's fairly straightforward, but always dependent on the specific needs of the kiddo.
WHAT IS THE BEST WAY TO SUPPORT SOMEONE WHO HAS A KIDDO WITH CLEFT?
First and foremost, just be there for them. Listen to them when they need to talk, validate their emotions and fears through showing your empathy, and let them know you're there if you need anything.
One thing I would suggest not to do is to try to dismiss the person's feelings by trying to look on the bright side. In this case, it usually comes in the form of "at least it's fixable." While this is absolutely true, the parents already know this fact and are already grateful for that. However, it doesn't eliminate the other fears and emotions they're having around discovering that their child will have a notable birth defect and will have to go through a variety of surgeries (not to mention the fears of other potential associated issues).
That all being said, if you have said that to us or to someone else, we don't blame you at all or hold it against you. This journey has taught us a lot and it has made me realize I've probably said things to friends when finding out sad news (e.g. a miscarriage) that wasn't helpful. So know that if you've said it to us, that's okay! We just want you to know what does help in these situations in moving forward.