Cleft Lip/Palate

Pookie05 · February 2012

At our anatomy scan there is a couple picture that look like there may be a "slice" in our baby's lip. My aunt was born with a cleft lip and palate and her first surgery was performed at 6weeks. My great-aunt was also born with a cleft lip but not palate. She never had surgery to correct it and lived a long happy life.

We will be getting the surgery if our girl does have this. We are close to Valley Children's Hospital in Central California and they have amazing Dr.s and specialists in this.

I am aware that this is pretty common and affects about 1 in 700 babies. It is also sometimes completely cosmetic but can affect breathing, eating, and speech depending on the severity.

Does anybody here have experience in this and care to share your story with me? I'm hoping for some advice on getting through this and helping our girl to have the best outcome.

rsd12 · February 2012

My oldest was born with a cleft lip/palate. He is almost 6 yrs old. While we did not have any family history, we had so much support from family and friends! He is a typical boy ; ) Our craniofacial team helped so much too, especially with feeding issues the first few days. We did use special bottles (pigeon) and the issue was really figuring out the positioning for feedings. He had 3 surgeries by a year old. All of it has been harder on us than him ; ) He had been in speech therapy, and recently graduated and his speech is great (but my middle son is also getting speech services and he is not cleft affected ; ) you will figure things out! Let me know if yo7 have any specific questions too!

Pookie05 · February 2012

Thank you! This was very encouraging.

megs68 · February 2012

My DD was born 9 weeks ago with a cleft palate. It was a surprise. She only has the palate, no lip. We had no family history of this. It was identified when she was having trouble breastfeeding. We were referred to a cleft team at a local hospital and have been seeing them regularly for visits and weigh-ins.

Her hearing is also impacted - she's failed her hearing tests due to liquid in her ears, but I know she can hear some, just maybe less. She hasn't had any ear infections yet, fortunately, and will be getting tubes put in at 3 months and will hopefully improve her hearing after this.

Feeding has been a struggle. From what I've read, you are usually able to breastfeed if just the lip is impacted and surgery is done around 3 months. The palate makes it almost impossible to breastfeed alone and surgery is done closer to a year. I've been exclusively pumping to feed her. She gets milk out of her nose a lot and so the breastmilk is gentler and will hopefully help her immunity to prevent ear infections. I feed her using a special bottle, a Medela Haberman. They are pricey, but help with the suction. She is unable to get adequate suction due to the hole in the roof of her mouth - it's like us trying to drink out of a straw with a hole in it - so the special bottles help. Definitely see a lactation consultant for help in breastfeeding.

This weekend I found a board at babycenter just for mothers of cleft-affected kids and it has a lot of helpful resources and links. Check it out here: https://community.babycenter.com/post/a23546195/helpful_links_faqs_and_info_for_parents. Feel free to PM me with any questions - it's a lot to take in.

SoundersChick · February 2012

My son Edmund, who is 9 months now, was born with a complete unilateral cleft lip and palate. It has been a struggle. His cleft was extremely wide and he had to wear a NAM (nasal alveolar molding) for 3 months to help close the gap and align the gum line. It was an extremely rough 3 months. The tape tore his cheeks apart and at one point because we couldn't tape we had to leave the NAM out and the cleft changed just enough to make it no longer fit and we had a second one made. About a month later we had to leave it out for his cheeks to heal again and it started choking him. We and everyone on his team at Seattle Children's agreed that it just wasn't working for us and that we were going to schedule surgery ASAP instead of trying to continue with the NAM. His orthodontist felt so defeated because it wasn't working for us. We went from having a cleft that was 2.5cm wide to a cleft that was 1cm wide.

He had his first surgery on October 7th 2011. The first night was pretty bad pain wise but after a morphine drip for a couple hours and a good sleep Tylenol did the trick. He did amazing and he looks awesome now. We are gearing up for his palate repair and ear tubes put in in the next couple months. He has temporary hearing loss due to fluid in the middle ear which is the reason for the tubes. It's been a challenge but I wouldn't change it for the world.

birdie9927 · February 2012

Hi Pookie,

It will be ok! My baby has a cleft palate. DD's was not discovered until after birth. It's so traumatic to have something wrong with your baby. But all the doctors keep telling us this is an common surgery with excellent outcomes. To the surgeons, it is "boring."

My baby girl was born a week ago today. I struggled a lot in the first 24 hours to feed her. On the second day we saw a lactation consultant and she worked fruitlessly for awhile to try to get her to latch. She then put her finger in DD's mouth. The consultant's eyes got really big and said, "Umm, you need a specialist...." The pediatrician who came by earlier that day had missed it completely! The rest of our hospital stay was a blur of specialists who gave contradicting information. One even told me this happened probably because I didn't take enough folic acid (this is total bs and was so upsetting). It was so stressful.

As the others have said, breastfeeding is an issue with cleft palates but not always cleft lips. I do feel sad that I cannot breastfeed my baby. We have the special feeder and I am pumping. She is eating well now. She will also more likely be prone to ear infections so they told us ear infections will be more actively managed (i.e. antibiotics more readily). Many babies have tubes put in their ears. Her surgery will be between 6 and 12 months.

Your baby will be beautiful and in the long run, will be just fine. Hang in there!

rsd12 · February 2012

It;s strange for me now, almost 6 years later too... what most of the pp added is so true... but when you get to this age, you just enjoy your child and appreciate where they are and kinda forget about the cleft. I still stress about surgeries ; ) but my son has amazed me with his stength. My son did need ear tubes (just had a sugery in early january too... but he made it so easy!), as he also had fluid in the ears off and on since birth (this is his 2nd set), and no ear infections. But temporary hearing loss. I do think it is crucial to find doctors that you trust and can really communcate with (surgeon, pediatric dentist, ENT, pediatrician).. it is so confusing and hard the first year.

Kristine Schilling · February 2012

you have a private messege.

Onomatopoeia · February 2012

My brother was born with a severe cleft lip and palate, and while this was 20 years ago I wanted to post to share from a future perspective. He had special bottles, multiple surgeries (including a few very minor cosmetic ones in his teens that he chose) and dental work, ear tubes, and eventually speech therapy. He had wonderful doctors, and 20 years later it looks incredible. You can barely see any scars (and even then they are really only noticeable as he has a darker skin tone), he has no physical issues eating, drinking, or talking, and he is a well-rounded, popular college student. No one in my family ever made a big deal of it, and I never once heard him complain. I just wanted to to share in case you were feeling overwhelmed and unsure of the future...with the right care and invested parents (which you obviously are) there is no reason your little girl won't have the best outcome.

useurname · February 2012

I appreciated this message board along w/ everyone's comments. BC of the meds I'm on (I wasn't allowed to stop taking them b/c of the risk) it is putting my DD at risk for cleft palate or lip. So far w/ ultrasounds things look ok, I just pray everything will be. I'm even more encouraged w/ reading these posts.

Thank you so much

sugarbeetsy · February 2012

:::hugs:::

It WILL be okay.

My 22 month old son was born with a cleft lip (unilateral, complete) and a partial cleft palate.

I breastfed.

His development is perfectly on track.

He has an insanely gorgeous smile.

My blog link is in my siggy and I chronicled his first surgery (click the cleft link among all my other blog tags in the righthand column).

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