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August 2012 Moms
Mrs.RTH
member
Our baby has a cleft lip and palate :(
Mrs.RTH
member
So we went to see the Maternal Fetal Medicine specialists to have them look at the missing umbilical artery and spot on the baby's heart. While they were doing his ultrasound they finally got a good look at his face and we found out he has a cleft lip and a cleft palate as well. He'll probably need 7-10 surgeries and ongoing therapy until he's an adult to fix it. The genetic counselor is now reffering us to Seattle Childrens Hospital to meet with their craniofacial surgeons. When they told us our baby is going to have a cleft it felt like someone punched me in the stomach. I'm glad it's something fixable, but it's still hard coming to terms with it. He won't be able to breast feed or use a normal bottle or cup because of the missing palate so it makes feeding (and later things like speach development) difficult. I feel so bad for my poor little guy that he'll have to go through so many medical procedures as a kid, and I just dread the looks he'll get and whispered (or not-so-whispered) comments people are going to make. I'm hoping he'll have the majority of it fixed by the time he goes to school so he won't get made fun of by the other kids. It's so hard knowing there is no way I can protect him completely from that, and kids (and adults for that matter) can be so cruel sometimes. I guess we're in for a bit of a rollercoaster ride here.
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Re: Our baby has a cleft lip and palate :(
Regardless of what anyone says that is your beautiful baby boy and nothing can change that.
I'm so sorry to hear this! T & P's sent your way!
Did they say anything about doing surgery while he is still in the womb? I thought I heard they could do that and it would reduce later surgeries.
blog! thescenery.net
My heartfelt thoughts go out to you and yours. I know this journey of just trying to get our LO's here is strenous enough, and then these additional stressors are...just crazy. Big hugs go out to you!!!
The only thing I can say is that I'm so glad you live in the Seattle area and will have the multitude of doctors, medical facilities, and state of the art technology around every corner. I've had several surgeries here in Seattle, and I know that several of my friends with children have always received AMAZING care and results from this area. I know your son will be in good hands. Keep the faith!
Make a pregnancy ticker
I don't think so but I could be wrong. We haven't met with the surgeons to discuss it yet. From what I've found online they usually do the first surgery to start repairing the lip cleft around 12 or 18 weeks. Some of the babies have devices put on before that to help close the gap a little more before the surgery. The palate surgery usually happens sometime between 6 and 18 months, but a lot of it depends on how severe the cleft is and whether they need bone grafts, etc.
I have a cleft palate -- no cleft lip but a cleft palate. I didn't have to have surgeries growing up, but I did have significant speech issues. I was in ST from the time I was 2 until I was a junior in high school.
Until they can determine how bad the issue is, try to not stress about it too much . Easier said than done, I know, but stressing won't do either of you any good.
Thanks, it's good to know! I've heard Seattle Childrens is great but the only person I know who has had surgery there had back surgery as a teen. If you could find out the name of her doctor I would really appriciate it. That way if I have a choice or can request someone I'll know I have a good one.
I know exactly how you are feeling. I found out in December of 2010 that my son, who was born last April, was going to be born with a cleft lip and palate. I remember the morning like it was yesterday. We went to our appointment excited since we had just found out we were having a boy only to be told that he would be born with cleft lip and palate and that we were being referred to see a specialist at UW medical center and meet with the high risk OB. We went out to breakfast after our appointment and I just felt numb. I really couldn't comprehend what it all entailed right then and all I could think of was what could I have done to prevent this.
I had several extra U/S to try and determine what type of cleft he would be born with but we could never get a good look at his face. I had an amniocentesis to determine whether or not he would be born with any chromosomal defects. I remember the panic that I felt not knowing exactly what his cleft would look like and how severe it was since we could never get a good look at his face.
Edmund was born on April 30th with a complete unilateral cleft lip and bilateral cleft palate. He has 1 surgery under his belt already and a second one on April 27th.
You are welcome to PM me with any questions that you have about anything. The doctors and nurses at Seattle Children's are awesome and have been so wonderful to all of us.
One other thing, don't worry, easier said than done, about how many surgeries they say he will have at this point. There is no real way for them to give you an accurate surgery time frame until he is here and they can get a good look at where everything sits. My OB at UW told us that he would most likely have 7 or 8 surgeries but once we met with the plastic surgeon he was very optimistic that Edmund would only need 2 maybe 4. Everything at this point depends on how he grows and there is no way to know how exactly things will move.
Just take it one day at a time and know that no matter what you are going to have a wonderful healthy little boy and someday this will all be a memory.
My T&Ps go out to you. Atlho I have no first hand exp with cleft, my DH was born with Downs when I want 18 yrs old. We didn't know until he was born. I remember the same numb feeling and all the worry when they began telling us what we were in for (heart surgeries, therapies, etc). So I am saying a special prayer for your family and your LO tonight.
I'm glad to hear positive feedback from others who dealt with or have known someone who has dealt with cleft.
**HUGS**
I'm so sorry for your tough news. Prayers headed your way for sure.
Just so you know, I'm a speech therapist and it's NOT true that your son definitely won't be able to breast feed. It may be difficult, but not impossible. Ask SCH if you can speak with their NICU speech therapists beforehand to see what their ideas are. Also see if you can get in contact with other families in the area who have gone through similar things. Many hospitals keep the contact information for parents and families who are willing to talk with others who have similar experiences.
TTC since 9/2011, BFP in Costa Rica 12/1/11!, EDD 8/18/12
I see you have lots of replys from many and people that have 1st hand experience. I work for a plastic surgeon and have for the last 13 years. Yes this is hard, but you child will have a pretty much normal life! Yes you might need a haberman nipple to help with feeding, BUT, yes I say BUT we have had some mothers still nurse with a CLP baby, very few I will be honest but I have seen it. PLEASE don't let the internet scare you, and please go to a Board Certified Plastic Surgeon.....that is a must. Also you will need to folllow with someone in ear, nose and throat (ENT) because most CLP children do need tubes in their ears, but that surgery is usually done at the time of the lip repair if the child has symptoms already. We run a CLP clinic EACH MONTH where we have anywhere from 4-10 kids each month we follow. They see Genetics, ENT, Oral Surgery, Orthodontics, Peds, it's a whole days events.
I know you are getting so much info, but if I can get you anything from my clinic I would be happy to mail things to you, we have so much info to share.
I do not know much about PM's on here, but please if I can do anything please reply and I will hook up with you....
___________________________________________________________________________
Trying for #1 since May 2010 l DX ~ Unexplained Infertility June 2011
IUI #1&2 = BFN; IUI #3 = BFP, m/c @ 6 weeks
November '11 ~ IVF#1 ~ ER 11/18 (29R, 17F) ~ 5dt of one beautiful blast on 11/23 = BFP!!
Beta #1 9dp5dt = 116, P4 = 28 ~ Beta #2 13dp5dt = 700 ~ Beta #3 20dp5dt = 9500, P4 = 26
1st u/s 12/27 - hb of 156!! EDD 8.10.12
**TEAM GREEN!**
Sweet baby boy born 8.18.12
Trying for #2
FET #1 - October '13 - c/p l FET #2 - December '13 - cancelled
l FET #2.2 - 1.30.14 - BFN
~ More testing - hysteroscopy, endometrial biopsy & more b/w - all normal / negative~
Surprise BFP while waiting on FET #3 ~ beta #1 500; beta #2 1600; first u/s 4/3 - measuring 5w5d, no hb yet!; 2nd u/s 4/10 - hb 132, measuring 6w6d - EDD 11.29.14
**TEAM GREEN!**
Beautiful baby girl born 11.24.14
Mom of 2 monkeys and 1 on the way!
Christian12/06, Liam 08/12, Monkey #3 10/10
I am sorry that you are having to go through such a stressful time! I am sure you little baby boy will still be the blessing you hoped for though! T&P out to you and your family as you go through this process. My cousin was born with a cleft palate as well and she was lucky that she only had to do a few surgeries and they did them when she was younger and she has virtually no scaring. Hoping for the best for you!
Same here. And very best wishes in this difficult time.
dx: LPD & low progesterone 11/2011
BFP #1 August 23
Im sorry you are going thru this. a friend of dh's - their cousins baby had a cleft pallet, and the surgery is amazing nowadays. I know kids can be mean- but honestly - out of everything- at least he is healthy!
Society- not saying you are- makes such a huge impact on looks that when someone isnt perfect it causes us to feel insecure!
I hope the best for you and your baby.
First, I'm very sorry. Bad news is the last thing you wan to hear when you go for and US.
Second: These people were born with cleft lip and/pallates:
Peyton Manning (AKA, rich, successful, goodlooking jock)
Jesse Jackson, Cheech Marin et al. They had their surgeries so many years ago and you can't even tell. Imagine what they can do today!
Third: I'll link you to this post when I was in 2nd tri the last time. She got great advice and you can see that her siggy is updated with her beautiful, happy baby.
I know this is barely a consolation and that you have this huge road ahead of you, but you LO can live a normal, happy successful life. I wish you all the luck and we are here if you need to talk.
(((HUGS))) and I'm so sorry you had to get this news
I do have a close friend whose son was born with a cleft lip/palate and his series of surgeries were completed right around the time he turned 3, so well before he started school. He has been seeing a speech pathologist/therapist since 18 months, and he is really doing very well! He just turned 4 last month and he is such a joy for his parents! He still has challenges ahead of course, but I just wanted to let you know that your sweet baby boy can make strides in his recovery with the help of professionals and your love and strength for him
Hang in there and T&Ps to you both!
~Sweet Girl *8/18/08* c-section ~ Sweet Boy *12/2/10* VBAC ~ Sweet Boy *8/14/12* VBAC~
VBAC Birth Story 2VBAC Birth Story
With everyone else, sending lots of love and prayers...
Also will mention that I remember a girl in my Sunday School when I was growing up who had a cleft palate - I don't recall people making fun of her, but I remember being very interested. I think that if kids understand the reason behind something, they are less likely to tease, and I remember my mum explaining very clearly why kim talked differently than I did.
And like other people have mentioned, this experience was 20-some (mumble-mumble) years ago. I have full confidence the therapeutic and other processes you choose to engage with have come leaps and bounds since then!
I PMed you as well (about how I just found out I'll be dealing with somewhat of the same thing in the same area as you a couple weeks after you),
but I found this link researching the same thing on my baby last night and it really helped me feel better. https://community.babycenter.com/post/a23158271/newborn_pictures Those brave mothers that posted their babies pictures had nothing to be worried about - their little sweethearts were still totally darling! Just seeing their faces still smiling and hearing the mothers talk about being proud of their babies really calmed me down.