I'm just back from our 21 week ultrasound and they're pretty sure that the baby has a cleft lip. We'll have to see a specialist in a few weeks to learn more - confirm that there is a cleft lip and find out if there are other problems. I have no idea what all this means. I'm scared for our baby and for us.
I'm so sorry you are going through this and you had a scary u/s. Its horrible to hear that anything could be wrong with your precious babe.
I hope you are able to be seen by the specialists ASAP to get this sorted out one way or the way. Sometimes the wondering and 'what ifs' are even worse than knowing. (hugs), mama.
Hugs, Amanders - but hopefully this will be good news to you. I have a really good friend who was born with cleft palate and you can't even tell. Even better news, neither of his two kids were born with it. Since since 1980 doctors have come a very long way in treating it. Your baby will be just fine!
(Jumping DDCs to post)
Most children with cleft lip/palate have one or more surgeries that make it undetectable except for a small scar. They might suggest you do a 3d ultrasound so they can make a treatment plan in advance of the birth. Hugs.
Here are two resources that discuss breastfeeding with a cleft lip or palate: http://kellymom.com/health/baby-health/bfhelp-cleft/ and http://www.lalecheleague.org/nb/nbmayjun02p88.html . If you contact LLL, then can hook you up with a leader who has real experience with it.
We were told at our 20 week ultrasound that our baby girl has a cleft lip. I went in for another u/s with the perinatologist and there was no cleft detected so right now we are are waiting for the baby to grow some more and we'll have another scan next month.
I know how alarming it is to learn your baby could possibly have a birth defect. I cried for a week straight feeling guilty and terrible. The specialist will probably ask you questions about the health of your family and your partner's family and do another u/s to confirm. I was told that they can't always see palate involvement in an u/s. The good news is that a cleft is usually isolated most of the time although there are some syndromes it *can* be linked to. It is not life threatening, nor is it your fault. A cleft lip is usually repaired when the baby is 3 months old and the palate is usually repaired at 9 months and older. It can present problems with breastfeeding if the palate is involved because the baby cannot keep proper suction.
There are support groups online, I'm not sure if I am allowed to link to other websites but if you PM me, I'll send them along.
Once you have confirmation of a cleft, your next step will be to meet with what they call a cleft team. Basically it's a group of specialists that deal with craniofacial surgery. It's best to meet them during pregnancy so you can know what to expect when the baby is born, mostly in regard to feeding.
This website was really helpful, it's the cleft palate foundation.
Thanks for all the support and help!
I'm starting to feel like I can get my head around this. Thanks for the resources - I think there might be some other boards here where I could ask some more questions - the main thing I'm thinking about now is how much can be diagnosed before birth and how much do we just have to wait and see? The ultrasound today didn't produce great pictures. I'm not sure if we can find out ahead of time if there might be a cleft palate or other physical deformities. The planner in me really wants to know what we're dealing with.
I found a support board at BabyCenter.
My doctor told me that sometimes they cannot see if the palate is involved too (before birth). It depends on the position of the baby. Usually they can see the extent of the lip involvement.
My first u/s didn't have the best pictures either but the 2nd one did and everything looked normal (talk about a roller coaster of emotions!). The tech said that sometimes there is a shadow from the umbilical cord or something else that distorts the image.
I'm not sure how they screen for the cleft associated syndromes. After talking to the genetic counselor and answering a million questions, no one seemed concerned about other problems.
All I know is the syndromes are much rarer than the baby having just a cleft lip/palate. Check out the FAQ at the cleft palate foundation, it's really helpful.
Did Joaquin Pheonix have a cleft lip? It kind of looks like it -- and he's super attractive
Amamders - I am with motomom and other posters- they have so much great technology these days that the physical aspects are easily fixable. It is always disturbing when we find out anything could be happening with our babies. I have a few friends that had cleft palates and they are not very noticeable and attractive people.
I am with you on the planning- I have to go back for one more fetal echo because they could not visualize this tiny part of the heart and there could be a hole- they think the odds are good that there probably is nothing wrong but and they said if I did not come in again they would not be overly concerned but to be sure I should go back at 22 weeks.
If we have to do surgery or anything I want to prepare for it and find the best doctors available. In the time I have been waiting to see- I have tried to stay zen and remember that I cannot change the course of out journey but I can try to remain as calm as possible and let my emotions out in healthy ways- a good cry and weep session is great to get through to the next step.
Waiting sucks- I am so sorry I have really struggled with this in this pregnancy and my heart goes out to you.