Cleft info

Our firstborn child Bailey was born with a right-sided unilateral cleft lip and palate.

Bailey - not even a day old

While many parents are surprised at birth, we were fortunate to have found out about Bailey's cleft at a 24-week ultrasound. On ultrasound our doctor was able to visualize the cleft lip, but the palate is usually unable to be confirmed before birth, which was also true in our case.

Before her birth we were able to educate ourselves and prepare as much as possible. We received the name of a plastic surgeon associated with a local cleft team, and we met with him before her birth. This put many of our fears to rest. I joined an online support group/board for cleft parents, which I found to be extremely helpful. This site has a huge list of links to support parents with all aspects of having a child with a cleft, from bottles to financial assistance to help finding a doctor.

We knew that most cleft babies cannot be breastfed and Bailey would need to use special bottles. During her one week stay in the NICU (for being born 4 weeks prematurely), we learned how to use her special bottles and very quickly became the ones educating the staff. Bailey did well eating with every bottle we tried. {We mostly used the Mead Johnson bottles just because they were super cheap compared to the Haberman at $52 per bottle.}

eating in the NICU {with the Haberman bottle}

Bailey had two cleft surgeries during her fist year of life: a cleft lip repair at 3 months and a palate repair at 9 months old. With each surgery she was in the hospital for approximately two days. We were amazed at how quickly she bounced back: she had no disruption in her sleep and was back to her normal self in mere days with just Tylenol for pain at home. She has also had multiple surgeries for ear tubes, which is very common in cleft children.

immediately after her first surgery in May 2010

a week after surgery, wearing arm restraints

hanging out before palate repair surgery - November 2010

In August of 2013 Bailey had her first nose and lip revision surgery; basically it was a nose job to correct the flattening of her right nostril and a tweaking of her upper lip to make each side look more symmetrical. And just like with the other surgeries, Bailey was back to her normal self very quickly - she was running around and playing in her kitchen when we got home that night. 

immediately after nose and lip revision surgery - August 2013

Her most recent surgery was July 2016. Bailey had her adenoids removed (which were blocking 100% of her nasal airway) and had another lip and nasal revision. Because her tonsils were normal, our surgeon opted to keep them since they help cleft kids get a better palate seal, which helps speech and swallowing without leaking foods.

just out of her adenoidectomy & lip/nasal revision surgery - July 2016

Because of the cleft, Bailey is missing a permanent tooth, so she will most likely need a dental implant in the future along with braces, a palate expander, and maybe even work done to her jaw. More nose jobs and lip revisions are also very likely in the years to come as her face changes as she grows.

Now that Bailey is 6 and in 1st grade, she's starting to notice a few differences between her and other kids, typically her brother and sister. As her parents it tugs at our heartstrings to see this, but we know it is going to happen. Right now she has noticed that her nose drains more frequently than anyone else's, and quite often after meals - especially if something is an orange color or she eats chocolate - she will have some leaking of color out of her nose. It's frustrating to her, but in the grand scheme of things, it isn't a big deal. We haven't dealt with any other child noticing at this point, so we will cross that bridge when we get to it. 

I write about Bailey's cleft in blog posts occasionally. To see all cleft-related posts, choose the "cleft" label on the right hand side of the blog, or click HERE. The following links are just a few to get you started if you would like more information regarding clefts.

Bailey's health team:

Omaha, NE area

Her cleft team

Her plastic surgeon

Her pediatric dentist

Helpful cleft sites

www.cleftline.org

www.cleftadvocate.org

www.ameriface.org

How you can make a difference

www.smiletrain.org

Just $250 covers ALL costs for one surgery!