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Cleft lip?
I am writing this post to reach out to other mom's who have been through, or who are going through, the same thing that I am. I want to hear your stories and feelings about your child with a cleft lip or cleft palate.
I found out yesterday, at just about 26 weeks pregnant, that our baby boy looks like he may have a small cleft in his lip. We have an appointment/another ultrasound with a specialist tomorrow to give us more information and tell us how severe this cleft lip is and if they think it also includes a cleft palate. When they told us all I could do was come up with positive things to say. At least it's not autism, like a cousin of mine has, or a problem with something like the heart. And my boyfriend and I have scars above our lip in the same place the baby will (though ours are from animal related incidents, not cleft surgery), so the baby will match us. All I could do was think of these ridiculous things about it to tell myself our baby would be fine. As long as we fix it by the time he's in school and he can still eat - we'll be fine. Our nurse, my doctor, and my boyfriend seemed kind of shocked with how I was handling it. But between having the 5 year old I nanny with us and trying to not be upset by the news I just held it all in. On the car ride home my boyfriend was on the phone with his friend and told him (though we hadn't agreed to tell people and haven't seen the specialist yet). And the way he blurted it out was like he was upset that there's something WRONG with our baby. I don't know why this angered me so much. I guess I felt like I didn't want to be upset. Being upset makes it real. I don't want to ever have to tell my son I was upset or disappointed about anything involving him. So I went to bed to have some alone time and decided to research more about clefts. I ended up balling for three hours (the lovely thing about hormones, once you left yourself get upset it just doesn't stop). When my boyfriend came to bed he basically told me I was being irrational and emotional. He said we don't even know yet (yet he's the one who was silent all the way out of the appointment and then blurted out to his friend that something is wrong with the baby). I think he just hasn't processed it yet. He tends to turn into a complete jerk when he's upset about something. And this morning he picked a huge fight with me about how his job is more important than mine, so obviously there's something going on in there.
The first problem I'm dealing with is guilt. I didn't find out I was pregnant for over 2 months. Which means the first two months of pregnancy, when the lips were forming, I was occasionally drinking (two times in those two months could count as excessive), I was quitting smoking, and I was not taking folic acid vitamins. Obviously the day I found out I was pregnant I quit smoking and drinking and started on vitamins. Before pregnancy I was a larger weight, though I had been making efforts to lose weight and eat healthier. And, I worked at a veterinary hospital where I was constantly exposed to radiation. From everything I read the causes of clefts, as far as they know, are taking certain medications/drugs (which I did not take), hereditary (nobody in our families have ever had a cleft), exposure to radiation, drinking, smoking, and lack of folic acid. I feel like, even though I didn't know, it's my fault that my little man has to go through this. I know it's crazy for me to feel guilty, and I can't change the past. But I can't help feeling like I've done my son wrong. Which completely breaks my heart. I feel like, without even giving birth, I am the worst mother on the planet. People who have mentioned my pregnancy today I actually have to tune them out because I don't feel like I even deserve to be a mom right now.
The other issue I'm having is the words surrounding a cleft lip. Deformity. Defect. And my boyfriend's word - wrong. I am already so in love with my son. The main thing I want for him in life is to never have anyone make him feel not good enough (which is why I had already cut out people from my life who made me feel that way, like certain family members, in recent months. The one thing I hated about my childhood was not feeling good enough due to unfit parents). My boyfriend and I promised when we found out I was pregnant that our baby would never, ever, be made to feel that way by us or anyone else in his family. Obviously, you can't control all the kids at school. But at least his home life he would know he's perfect to us. I worry now that people may treat him differently now that there's a reason. People may gawk at him before his surgeries. And then even after that kids (and even, unfortunately, adults) can be immature, insensitive, and cruel. Sometimes the people closest to you say the most hurtful things, even when they think they are being supportive. I found a babycenter thread that discussed this - parents trying to figure out if they should show it off in pictures or hide it. Most of the moms said they embraced the cleft, and one of the moms who hid it said she regretted hiding it. Obviously, I don't ever want my son to think I am or was at some point ashamed of him. Deciding to go through with this pregnancy and have him is one of the best decisions I've made in my life, regardless of how much it was a "surprise". His cleft is a part of him. I won't think less of him or love him less. But I know I will always need to make sure he knows that, even more so now that he may be different than other people. I'm worried if I tell our family wrong or act upset about or hide it that it somehow shows me being disappointed or unhappy with the outcome of him, as crazy as that sounds. I don't want my son to ever feel like he was deformed, defective, or that there was something "wrong" with him. He's still a huge miracle in my life. I have not felt upset with the world that I am getting an imperfect baby, as I have heard some people have felt. I have not felt disappointed about newborn pictures or showing him off to family. I have not felt anxious to tell family members, aside from trying to find the wording that would never hurt my son's feelings. But, obviously, if you tell them in advance, they'll be less likely to be awkward around the baby and gawk. And the baby being born can be more important than the news of the baby having a cleft. I still feel in love with my baby and I'm sure I'll still think he's the handsomest man on the planet.
And, I also worry about what this is going to put him through. How do you comfort an infant with surgery? An infant who may not understand your words? Surgery is scary. Not just the risks involved with every surgery, esp with someone so little/fragile, but the waking up and recovering from surgery. I can't imagine going through that scary world and having no idea why or what is happening to me. And recovery from surgery is scary too. I'm aware that you have to deal with sutures and restraining their arms and lots of medications (like pain meds and antibiotics) and who knows what else. Which, sounds like it could be painful and scary as well. (Not to mention I can't imagine successfully getting medication down a fussy baby without a cleft, let alone one with a cleft on top of it). If it is just the lip it might just be a surgery or two when he's a baby. But - what if it's more than the lip? What if he does have hearing and speech problems? What if he will have to have surgeries all the way through adolescence? Nobody wants to see their kid struggle or be in pain. Obviously, I have no idea how we'd pay for all of that for all those years. But, that's not even my concern. What if as a baby he can't be breastfed? What if he has trouble feeding at all?
I know it is early to even worry about these things. But, I don't have anyone in my life who has been through this. And I would like to be prepared for the worst case scenario. Obviously all the bottles and pacifiers we've been getting will probably be donated elsewhere. It's just very overwhelming. Luckily we found out with enough time to prepare for this.
If your baby had a cleft lip or palate please tell me your story. Please tell me what bottles and products worked best for you. Please tell me how you were feeling and how your child is now. I just want to feel like I'm not going through this alone. And maybe being armed with all the information possible (even if some of it will scare me more) will help me deal with this mentally and rationally.
BTW - here is the link to the babycenter thread that did help me deal with this a little bit - https://community.babycenter.com/post/a23158271/newborn_pictures
This discussion has been closed.
Re: Cleft lip?
I will start by saying, when any of us start trying to conceive, become pregnant, go for ultrasounds we all hope, don't expect anything to be wrong....so when it is, not matter what the "issue" it hit's hard.
My first son was born after a wonderfully normal pregnancy, only to suffer oxygen deprivation sometime during labor and delivery. He went from this perfectly healthy "fetus" to this horribly sick baby in the blink of an eye- it was a true nightmare. We were thrown all kinds of statistics: 50/50 for cerebral palsy, cognitive delays, possible metabolic issues, etc. etc. We had to follow up with neurology and genetics...I had to mix my breastmilk with an anti-seizure medication. It was such a slap in the face and I had an incredibly hard time dealing with all the horrible things that were being thrown my way. I missed out on so many "first time mom" experiences because I was wrapped up with guilt, sadness, anxiety and intense depression. I am still angry 4.5 years later that i will never get those days back.
This being said.... my son, 4.5 years later is a healthy, smart, perfectly typical little boy.... heck, he is beyond "typical"...he is my special, miraculous little man.
My co-worker recently had a baby with a bilateral cleft palate. I was so angry when everyone was whispering, saying how sorry they were for her. I understand that everything is subjective, even my own story with my son is far easier than others journey's. However- a cleft lip is not life or death. Yes, he may endure surgeries, hard for mama and baby. Yes, he may be born looking a little different- again, not minimizing that this can be hard in our society. Yes, he may have some feeding difficulties...
BUT we live in a society with great medical interventions that can and will treat the condition and your beautiful little boy will go on to lead a normal life.
Don't compare this to: " It could be worse he could have autism" like you said.... you never know, in 2 years he may be diagnosed with autism. Or in 10 years ADHD.... or he may be short....or fat...or too skinny. The worrying and the "what if's" of parenthood never end... there are NO guarantees for any one us.
My advice: this is a fixable problem. Baby steps. Enjoy your pregnancy. Enjoy your baby. One day at a time. Buckle up... motherhood aint' for sissies!!!!
My son wasn't born with a cleft lip, but he was born with amniotic band syndrome which has caused some limb differences. I spent the first 3 months of his life blaming myself for his condition and questioning everything I had done while I was pregnant. So I guess my advice to you is to please try not to be too hard on yourself. Birth defects can happen spontaneously for absolutely no reason at all.
My husband sounded a lot like your bf in the beginning. I don't think they meant it out of disrespect, I just think that men process things differently. To my husband it was no big deal to say that our son was born with a birth defect, but it broke my heart every time I had to say it. Modern medicine has come so far, there are surgeries now for our children that couldn't have been a possibility years ago.
You are absolutely not going through this alone, the ladies here are wonderful and have been a great support to me throughout this journey. I hope I was able to at least provide you with a little bit of comfort. I wish you a happy and healthy remainder of your pregnancy!
My daughter was born 01/01 with a bilateral cleft lip and palate. We are two weeks away from her first surgery. The first thing is, you have to take a deep breath. Be joyous in the fact that it can all be fixed and they won't remember it. You have to remember this is still a baby, still the most wonderful thing the in world that you are about to get and the cleft is just a minor bump along the way. If he only has a cleft lip, the surgery is minor, if the palate is involved, it's another more involved surgery, but still VERY fixable.
I was very scared and upset when I found out too, and you have every right to be. Nothing anyone says is going to make you feel better until you see your beautiful baby boy. I know this from experience. It's YOUR baby and because of that, you will worry and worry and worry until it's all "fixed".
If it is only the lip, breastfeeding is still very possible. We tried with the palate, but we were not successful. We use a Special Feeder (aka Haberman) made by Medela, this is what the Cranio Facial team told us to use and also the hospital gave us when she was born. They have a nipple that is long and very flexible and the flow is controlled. It does not rely on suction, but pressure and you can assist them by gently squeezing the nipple when they "suck". You can buy them all over the internet, and in some specialty stores. I've never seen one at Target, Babies R Us, etc. Our daughter took right to it and never looked back, they adapt so quickly.
If it is confirmed there is a CL/CP, I would recommend meeting with a cranio-facial team. They will show you pictures, talk about what strategy they use (Latham vs NAM), and tons of other information. Stay OFF of google, it's just scary out there. They will also tell you their plan to follow him for life. They should have a coordinator who will assist you with planning and making different appointments. We chose the NAM (molding/taping) and it has made a huge difference, allowing surgery to be less invasive. It also prevented 2 additional surgeries this year for her. So for us, the commitment to taping/molding was well worth it.
I cannot speak to how to comfort my girl after surgery as we are not quite there yet, ask me again in a few weeks and I'm sure I'll feel like an old pro. The doctors/nurses/other parents have assured me they bounce back way faster than we expect.
As far as people treating him differently or gawking, this is a worry I have every single time I walk out the door. In the 5 months she has been alive, I have NEVER once had someone say anything negative to me. Even with all the tape and the obturator sticking out of her mouth. The most common comment I get is "she is SO gorgeous". I am proud of my daughter, she is the most beautiful creature I have ever laid my eyes upon and I'll be damned if someone is going to try and say otherwise. I have learned it doesn't matter what anyone else thinks or says, what is important is she knows how much I love her, and wouldn't trade her for anything else in this life. Arm yourself with all the information you can, learn about the cleft, learn about the treatments. The more information you have, the less power the cleft has. When someone asks you questions, you can educate them. The technology that is available today is incredible and by the time he is in school, no one will probably even be able to tell he was born with a cleft. I would never say they are deformed, they just look a little different. They are just like other babies, they coo and cry, they roll over, they play with toys and melt your heart. They just happen to have a little bit of extra care they need.
There is no telling how many surgeries he will need, if there will be speech issues or hearing issues, but that is what the cranio-facial team is for. They will help you every single step of the way. Take advantage of this!
Oh, and take a million pictures, because I guarantee you when the day comes to fix the lip, you will mourn the loss of the extra-wide, gummy smile your boy has.
Now that I have talked WAY too much, if you need anything or if I can answer any questions for you, please PM me.
Ashley
At 19weeks we found out that our daughter would have a cleft lip. We are still unsure of the palate and won't find out until she is born. Just remember that it is very correctable and just makes your baby unique. There is nothing else wrong with her so just count yourself lucky that if something has to go wrong this is it.
I am SO incredibly excited now to meet my baby girl and see her big gummy smile. No matter what she is my baby girl and I am so in love with her it's amazing.
The guilt is totally normal, I wasted a whole Friday night on my couch bawling my eyes out and apologizing to my husband. It runs in my family and therefore is my fault, right??? NO!
My aunt was born with a cleft lip and palate and when I asked her how she felt growing up and what my girl is going to be dealing with, she said "She'll be fine. It just gives her more character and a great story!"
Thanks for all the responses. Esp the two ladies who have/are dealing with this as well.
Here's an update to where we are now: We went to see the specialist that my OB recommended - the two hour appointment turned into four hours - which ended up being so much information I felt overwhelmed. First we met with a genetic counselor. She did a good job at assuring me that the drinking and smoking I did before finding out was no where near enough to cause a birth defect and that the lack of pre natals was also a highly unlikely reason. As well as the stuff I was exposed to at work. They told us about all these tests - because now they are wondering if there is a disorder that has a cleft as a symptom or if there is just a cleft. Which was a worry I didn't even have yet. My testing for downs I took a few months ago came back with a one in ten thousand chance, so they are pretty certain the baby does not have downs. One of the other tests they recommended has a chance of pre-term labor (and my boyfriend and I agreed we are continuing through with this pregnancy no matter what) - so we decided to not do that test. Another test they recommended costs $1900 and our insurance couldn't confirm that they would cover more than $500 (apparently it would start another deductible for me is the $500) so we decided that $1900 for a test that won't change anything for us was not worth it. We are going to test the baby at birth, which is much cheaper and easier since we'll have his actual blood. Then they did the ultrasound portion, which was about two hours. The ultrasound tech did the first part and it was nice to see that everything else was growing normally (apparently at this stage our little man is very excited to show his gender!). She checked the legs, arms, organs, most of the heart. We even saw the eyes. It was reassuring to know he was still growing okay in there and that other than his face he is a normal 2 lb active little man as far as we could see. She also said his behavior during the lengthy ultrasound was normal. Then the doctor came in and did another portion of an ultrasound - she confirmed the cleft and showed us in detail what she could see. It looks like the cleft on the lip goes all the way to the side of the nose, which is farther than we originally expected. She said aside from breast milk in bottles it probably will not be an option to actually breast feed, but she did assure me you can still put the baby there and let them try to develop that bond. And although the teeth buds look great - which is reassuring as far as not having a palate issue - there is still no way to be sure if the back of the mouth has a palate issue. We are going back once the baby is 2 weeks larger to do a full echo to check the heart. They already saw most of the heart but they said any time there is a problem they become more concerned with it (also bringing up more worries for me!). They referred us to a cranial facial surgeon at Seattle Children's, but they are so busy it's been a week and we still don't even have an appointment set. The doctor and counselor mentioned so many scary things during the visit I had not even thought of, including that I may be at risk for pre-term labor. I found the appointment to be very overwhelming and left with a million more worries than I came in with. I guess I was hoping to go into that appointment and get my questions answered, but I left with more unknowns than I started with. My boyfriend left the appointment feeling more reassured after seeing the ultrasound and the teeth buds. Us being on a separate page did cause a rift in our relationship for a few days, and although we've had some close comforting moments since then it still leaves me feeling like I am dealing with this on my own. I no longer feel guilty about what is happening with the baby - but I did go through a few days of great depression and worry (that sometimes I still find myself having to snap out of, luckily I've been busy this week with babysitting and petsitting so it's helped keep my mind off it a bit). I talked to two family members about it and they were both very supportive and reassuring. My boyfriend talked to his mother (who normally speaks before she thinks and can say hurtful things) and she did okay with it. I also had him tell her to not bring up the defect every time she sees us and to not tell anyone, that we will do so when we're ready. My boyfriend and I, however, are still fighting about it a bit. He's been researching it and he's been careful with the words he uses around me and not to tell everyone yet. So he's getting a bit better. But, he's acted upset with me for being upset about it. It's not that I'm disappointed - I just feel so much sadness for our son and there's so much unknown. I feel like if they said "Ok, your baby has this and this and this and this is what you will have to do differently" I would feel better than "Well, your baby has this, but he might also have this and this and this but we have no idea." I feel like I could be preparing instead of just worrying. I guess becoming a mother is worrying in general. And I'm sure as time goes on and we find out more information and see that surgeon I'll feel better.
Sounds like you are on the right track now, as hard as it is. I know exactly what you mean about having more questions than when you went into the appointment. When you meet with the Cranio-Facial team, they will be able to answers lots of questions. If you are able, try and take your ultrasound pics and they can give you their opinion.
I was never told that having a cleft would put her at risk for pre-term labor. I had polyhydramnios (too much amniotic fluid) and was told that I wouldn't make it to Christmas (Due Jan 8th), and Christmas came and went and still no baby, I finally had her at 39 weeks, she was totally healthy and average sized. My point is, we were scared a lot unnecessarily, partially I think the doctors were trying to cover all bases and partially because they were trying to cover their asses. Don't get me wrong, we had a great specialist we saw, but looking back I could have done without about half of what she told me was "going to happen" because it didn't. Were you referred to a maternal-fetal specialist? This is where we saw our genetic counselor and we saw the Doctor continuously through my pregnancy. We were able to monitor E closely, make sure she was growing, make sure everything else looked great. We did opt for the amniocentesis, we wanted to be prepared if there was anything else. Our results came back normal, we were told that the CL/CP is more than likely an isloated issue even though it can be associated with other syndromes, in our case this was true.
It took me over a week of crying to finally be ok, I felt that I was never going to stop crying when I found out. We told our families of course, and a few select friends and I found that talking about it with my mom and my husband were the best way to get past it. Our genetic counselor told me something that helped me get through the really bad days, that you have to mourn the loss of the baby you think you are going to have, and celebrate the baby that you will have. It made total sense, no-one ever imagines their baby to have issues, that is every mother's fear. And when you receive news that their is an issue, it's heartbreaking. What I kept having to tell myself, was that yes, it's scary and sad, no-one wants to go through this, but in the end it can all be fixed. I still get mad some days when I have to tape her face, or put her mouthpeice in, but in a few days that will all be over and we will move on to the next stage.
Everyone deals with grief differently, my husband was upset for a few days and then moved back to excitement. He never seemed to let it bother him, which made ME crazy. I felt alone some of the times, but now I realize we just handled it differently.
Good luck to you honey. I am here if you need/want to talk. I would be more than happy to give you my # and we can chat. I know it's scary and I was lucky to meet some moms who were going through it when I was pregnant, and they helped me immensely. You are not alone, and I will offer you whatever support I can.
Hi AshWest,
I just wanted to personally thank you for your posts. I'm expecting my baby in October, and have also been informed that he will be born with a unitlateral cleft lip and possible palate. After going through much of what has been decribed above, we are coming to terms with it. As sad as i am that we'll (HE'LL) have to go through, surgeries, specialists, tubes etc, i'm glad that it's fixable and that we'll have a healthy, happy baby boy to love and nurture.
I haven't yet met other parents who have had a cleft baby, so really appreciated your honesty and candidness.
S. Irvine
Victoria Canada
Sissbrown