Unexpected bump in the road...Cleft Lip

judiegal6May 18, 2012

My beautiful daughter #4 (I have 6)delivered her first child yesterday, a boy and my 8th grandchild. I have been lucky to be included in all 8 of their births, 3 of them were c-sections and one of them was twin girls who are turning 3 next month. My newest GS born yesterday is beautiful and healthy. We were all blindsided though, as he was born with a cleft lip and palate. I have been SO lucky to have all healthy children and grandchildren, but I'm feeling guilty that I went home and cried after he was born. My daughter my most sensitive and emotional child has been absolutely amazing. The hospital is giving her such help and she has been able to nurse him with the help of a lactation consultant and special breast shields. They already have an appointment scheduled on Monday with a top specialist at Children's Hospital Boston. He faces many surgeries, but the outcome looks good. Please pray for him.

Judie

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trailrunnerbiker

I don't think you should beat yourself up at your initial reaction. We all have things and ideals that we cling to . That doesn't make us bad ....just human. You have already begun the steps toward acceptance and your DD sounds like she is doing so well too. Kudos to the hospital staff on their response. My DIL has had a wonderful lactation specialist and it has meant so much to her.

I will be keeping you and your DD and new GD and family
in my thoughts . c

    Bookmark   May 18, 2012 at 5:57PM
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francypants

Don't feel guilty at all! I think I would have the same reaction and it might be caused by this constant picture I keep seeing in one of those "please help this child and those like her" ads. The girl in the ad has a cleft lip/palate.

We all want our loved ones to be as healthy and normal as possible.

    Bookmark   May 18, 2012 at 6:45PM
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tinam61

I'm sorry your family is dealing with this Judie, but thankful that it is something that can be dealt with. I never thought about cleft lip/palate and nursing. It's great that your daughter is able to nurse him!! Keep us posted.

tina

    Bookmark   May 18, 2012 at 7:28PM
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lukkiirish

The only reason you had that reaction is because you have so much love for both mother and child. I'm so sorry this has happened and thank God he's healthy otherwise. Of course all of your grandchildren are beautiful and special, but I suspect this grandson will have a little more spark to him, endearing all those who meet him as he grows up.

    Bookmark   May 18, 2012 at 7:32PM
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cyn427 (zone 7)

They perform miracles now for children with cleft palates, so that should end up being a relatively small bump in the road for the little guy when viewed several years on! I am sending all good energy their way. Aren't we lucky to live here where we have the resources to fix it?!

Your reaction was a completely normal one that any of us would have-the love and joy and worry just all came to the surface. Hang in there and definitely don't feel guilty. Sometimes, we just have to let ourselves go. Give that little fellow a kiss on his head from all of us.

    Bookmark   May 18, 2012 at 7:44PM
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awm03

cyn427 is right. My niece was born with a cleft lip & palate 30 years ago, and there is so little consequence from that for her now. The issues in her youth were several operations over the years, dental work, speech therapy, and reproductive organ problems that needed fixing (a deformity in one way can be an indication of problems elsewhere). But all that is behind her. She is such a beautiful soul. I think her medical problems made her more mature, persevering, and understanding. My very best wishes for a happy life to your daughter & her new baby, and congratulations to you on your wonderful new grandbaby!

    Bookmark   May 18, 2012 at 7:54PM
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bonnieann925

Congratulations on the birth of your grandson. I want to reassure you that, although it doesn't seem possible right now, there will be a happy ending to this. Being in the dental field in the Boston suburbs I can already think of the pediatric surgeon at Children's (and his entire team) that do miraculous work on cleft palates. Yes, you are feeling sad for your DGS and for your DD, and rightfully so-this is not what you expected, but please know that there is tremendous success in reconstructing the palate, lip and nose.

Ironically two of my three DD's have good friends who were born with cleft palates and both were treated at Children's Hospital by the same physician (Dr.M). One is now thirty-one and you would never know she had been born with a cleft. The other is now twenty-four and she too is doing beautifully.

There are a series of surgeries, timed to coincide with the baby's growth and development. After the inital surgeries, there will be reconstruction at crucial junctures in the child's development, often coinciding with orthodontic treatment for the teeth involved.

I'm sending you lots of prayers for the strength to support your DD and your DGS on this journey. Your DD is off to a wonderful start by being able to breastfeed. She has already shown determination and strength by being able to achieve that milestone. Bless those lactation specialists!

    Bookmark   May 18, 2012 at 8:47PM
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polly929

Congratulations.
Judiegal- yes an unexpected bump in the road. Your reaction is a normal reaction. You were not anticipating this and you need some time to adjust to the situation. Don't feel guilty, what you are feeling is completely normal. Although a bump in the road the prospect of surgery on a little baby you love is always tough. I've been there. It is often hardest on the loved ones, the little guy will never remember any of it. I'm sure he will do great.
One of my daughter's little friends had a cleft palate with a small chin. Something called Pierre Robin sequence. This little girl spent her first 8 months in a NICU, had a tracheostomy, a g-tube and multiple surgeries in her first 2 years. At age 5, she is none the wiser any of it happened! She's one of the feistiest little 5 year olds I've ever met!

    Bookmark   May 18, 2012 at 9:09PM
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mitchdesj

Congratulations indeed, it's a miracle of birth. I do understand your reaction and you all seem so close, love will prevail, you will find the strength to help your family with this situation, and this little guy will need all the love you can give him, which he already has for sure.

    Bookmark   May 18, 2012 at 9:17PM
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jab65

My little grandson (3) was born with club feet and later determined to have craniosynostosis. It's hard to see babies go through surgeries, but it's amazing how they (and the parents) deal with it. Ours needed casting weekly for a year and cranial surgery at 1. He's the happiest, most determined little guy.

Your reaction is absolutely normal. We feel our kids pain. Just want to recommend that your daughter seek out mom support groups for cleft palate, either on-line or in person. Tremendous asset when questions and worries arise.

Best wishes to all. This too will pass...

    Bookmark   May 18, 2012 at 9:24PM
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jlj48

Congratulations on your new grandbaby and I have nothing else to add except my sweet nephew was born with a cleft palate. Now maybe his was a mild form but he only required one surgery when he was 4 or 5 months old. He is 4 years old now and he just has a tiny scar. It fades more every time I see him and he is adorable. I just think it's really something how we all hope and expect rather that our babies will be completely formed like everyone else. Mother's usually say "Oh I don't care what we have, as long as it's healthy". We say that like we're not asking for alot. Pregnancy and childbirth is AMAZING. And there can be so many unexpected twists and turns in their development. It is such a miracle when everything goes as planned and it is such a relief. I think that with modern medicine your little guy will be just fine and all of this worry will be behind you before you know it. I'm a praying woman and I will keep him in my prayers.

    Bookmark   May 18, 2012 at 9:30PM
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jab65

My little grandson (3) was born with club feet and later determined to have craniosynostosis. It's hard to see babies go through surgeries, but it's amazing how they (and the parents) deal with it. Ours needed casting weekly for a year and cranial surgery at 1. He's the happiest, most determined little guy.

Your reaction is absolutely normal. We feel our kids pain. Just want to recommend that your daughter seek out mom support groups for cleft palate, either on-line or in person. Tremendous asset when questions and worries arise.

Best wishes to all. This too will pass...

    Bookmark   May 18, 2012 at 9:32PM
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lukkiirish

Yes Judi, I apologize I forgot to congratulate you as well!!! That's amazing you got to be present for all the births. What a wonderful way to bond with your daughters.

    Bookmark   May 18, 2012 at 10:04PM
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sweeby

Congratulations on your new grandson Judiegal! Please stop beating yourself up for feeling what any loving grandparent would feel at first. But as you surely already know, the outcomes for children born in the US with cleft lips and palates are so very good -- and in Boston especially, he will have the world's very best care available to him.

A bump in the road is exactly what this is -- and may it be a long and winding road with many wonderful turns...

    Bookmark   May 18, 2012 at 10:11PM
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yayagal

Aww Judie, of course you feel so sad for your daughter, you were blindsided and reacted appropriately. It's sad as every mother wants her daughter's motherhood to be flawless. I have been involved with Boston Children's and a neighbor's son who had the same condition 35 years ago. I went to every dr. visit with her plus the hospital when her child was having surgery and today he is a handsome father of his own son. Today they do amazing things and the wonderful part of this is, the child is loved and safe and that's all he really needs. Your daughter will provide that and she needs you to be her strength and I know you will. God love all of you, saying prayers tonight for you.

    Bookmark   May 18, 2012 at 11:17PM
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nancybee_2010

Congratulations judiegal on your new grandson! Everyone has said this so well, and I agree, that it's very, very likely that this will have a happy ending!

    Bookmark   May 18, 2012 at 11:17PM
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judiegal6

Thank you everyone for all of your support. I just got off the phone with my DD. I was really worried about her because she wasn't showing any signs of disappointment, only exhilaration and excitement and normally she cries at the drop of a hat. Well she let it out just now and was sobbing, and feeling the same guilt I was feeling when I left the hospital. Shes overwhelmed with everything she needs to learn about his issues. She is going home tomorrow and will have a nurse visit in the afternoon. Sunday a lactation specialist will visit them. Monday is the appointment at Children's Hospital and Tuesday the pediatrician. She is also exhausted from the labor and delivery, she went to the OB on Tuesday, 3 days after her due date and began induction because of low amniotic fluid. She didn't deliver until Thursday morning. Thanks again for you sweet wishes and letting me pour out my feelings.
Judie

    Bookmark   May 18, 2012 at 11:20PM
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bestyears

Awww Judie.... I hope you all have the same wonderful outcome that joanie38's nephew had.

Lots of good wishes and prayers being sent to all of you.....

    Bookmark   May 19, 2012 at 12:26AM
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dedtired

Judie, it sounds like you have a wonderful family. What a blessing and how fortunate that your new DGS was born into such love. My friend's DGS also was born with a cleft lip and palate. He's had a couple surgeries and you can hardly tell. He is three now and a lovely, lively fellow.

I feel bad for your daughter. She must be exhausted from the pregnancy, labor and delivery and the worrisome news, not to mention going home to house full of kids! I'm sure her hormones are going wild now, too, as they do after after giving birth.

All will be well. Remember -- "that which does not kill us makes us stronger."

    Bookmark   May 19, 2012 at 10:49AM
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SheeshareeII

I'm sorry to hear about your grandson. I'm glad your DD was able to breastfeed. Saying a prayer!

    Bookmark   May 19, 2012 at 2:15PM
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judiegal6

bonnieann925, I am also in the suburbs of Boston. I'm sure this Dr. is the same Dr. M that you mentioned in your post. Thank you for your encouraging words.

    Bookmark   May 19, 2012 at 7:25PM
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camlan

judiegal, I think your reaction is normal. So is your DD's. What with the post-pregnancy hormones, she is probably going to have a few more crying jags. And that's normal. She was hoping and planning for a perfect, healthy baby and she is now facing issues she hadn't planned on. Anyone would be upset. And you are upset for her, like any mom would be.

My brother and SIL live outside New England, but they drive the 550 miles to Boston Children's Hospital 4 or 5 times a year, because that is where they finally got a diagnoses for my nephew's condition, when he was over a year old. He hasn't had dental surgery, just orthopedic surgery, but I have been impressed with the care and concern of every member of the staff. He's had a few surgeries and come through them all with flying colors. He's also *not* had surgeries that most doctors thought he'd have to have, because the surgeons at Boston Children's thought and debated and decided to wait a little and it turned out he didn't need them after all. Because those surgeries would have affected his ability to move, this was a very good thing.

Hugs to you and your DD and the little one. And good wishes for good news when the doctor sees him.

    Bookmark   May 19, 2012 at 8:47PM
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Bethpen

Judie, I think I would have reacted exactly as both you and your daughter did. I'm here in MA too and I have heard great things about the team at Children's. Lots of prayers for all of you and that all of his treatments go well.

I've always hoped that I'll get to be an involved Grandmother like you. XO.

Beth P.

    Bookmark   May 20, 2012 at 7:49PM
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judiegal6

Thanks, They came home yesterday and had a pretty good first night. DD is nervous, as any new first time mother would be. All of the little sounds babies make and wondering did he "get enough", and are they suppose to poop that often? She's exhausted but in good spirits today. Tomorrow is the appointment with the specialist. I will keep everyone posted. Thank You all for your kind thoughts.
Judie~

    Bookmark   May 20, 2012 at 8:24PM
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leafy02

Hope all went well. It's never easy to face lots of medical issues, but hopefully the specialist was able to encourage your DD and leave her feeling like it would be okay in the end.

    Bookmark   May 22, 2012 at 8:14PM
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jterrilynn

You are so normal to cry, its emotional thinking of the road ahead with surgeries and hospital stays and the toll it will take on the family. Thank goodness for modern medicine though!
I will send positive energies your way.

    Bookmark   May 22, 2012 at 10:50PM
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judiegal6

Well they had their all day appointment in Boston on Monday. There was a lot of information and plans made. DG-baby will have his first surgery at 4 mos. for the lip, 9 mos. for the palate and gum. They will also place tubes in his ears at the same time as they usually get lots of ear infections. The lip is considered minor as it is incomplete, (doesn't extend into the nose). The palate is complete (opened). Feeding is extra time consuming (breast shields and special bottles). DD is a trooper and daddy is awesome too. Baby has already re-gained his birth weight, in less than a week. He will also have dental work and speech therapy as he gets older. Otherwise he is extremely healthy and adorable.

    Bookmark   May 23, 2012 at 8:18AM
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sweeby

Good to hear there's such a cohesive plan. And Baby sounds like he's doing well and in very capable hands. This is all going to work out fine Judie.

    Bookmark   May 23, 2012 at 6:34PM
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lukkiirish

That's really great news. It's so great to hear that he's going to be okay. What a relieve it must be to have everything in place, to know what to expect and that everything will be okay. Now you'll be able to enjoy the blessing he is without fear, I'm so happy for you and your whole family.

    Bookmark   May 23, 2012 at 6:54PM
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hilltop_gw

Congratulations on the new grandchild! Your emotions were perfectly normal.....tears of joy and tears of sadness. There's anxiety over the unknown and a sense of loss. But each time you cuddle up with him your heart will melt and all will be well. Let your heart smile and the doctors do their thing.....this is fixable and he'll live a long & happy life!!!

    Bookmark   May 23, 2012 at 7:09PM
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anele_gw

Congratulations to you and your family!

The fact that your GS is back to his birthweight so fast and without issue is, to me, a huge accomplishment-- for any baby. I am not in the medical field but I would guess that from a medical standpoint, he is considered to be HEALTHY overall.

But, of course you and your DD cried-- so many emotions with any child, but especially a first, and especially when surgery is needed. Please keep us updated with each surgery and I know I will concentrate my energies on your dear GS. I am sure he is absolutely beautiful. I hope your family is taking tons of pics!

    Bookmark   May 25, 2012 at 10:21AM
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judiegal6

Thanks anele, we are taking lots of pics. An aquaintence of one of my daughters was born with the same thing and her parents never took pictures before it was repaired, she wishes she had before pictures. I'm just as proud of him as my other grandchildren, here is a sneak peek.

    Bookmark   May 25, 2012 at 6:52PM
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bonnieann925

Judiegal,
I've been thinking of you and your DD and DGS. Sounds like a good plan is in place and that your DD has good support from her DH. The fact that the baby has regained his birth weight so quickly is a great sign! I'm also happy to hear that the cleft is not complete and does not include the nose. Your DD is in the best possible place for the type of surgery her son will undergo. Although it may not seem so at this point, many signs are pointing to a very positive outcome. Again, you are all do an amazing job of assimilating the intricacies of the information/decisons you have had to make. Just keep supporting your DD! She's lucky to have you.

    Bookmark   May 25, 2012 at 6:56PM
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judiegal6

Thank you bonnie, I think we were posting at the same time.

    Bookmark   May 25, 2012 at 7:07PM
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sweeby

He's precious Judie! SUCH a little cutiepie!

    Bookmark   May 25, 2012 at 8:04PM
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maddielee

He's beautiful!

Congratulations!

ML

    Bookmark   May 25, 2012 at 8:13PM
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gsciencechick

He is beautiful boy!

I am keeping him and your family in my thoughts. One of my students/undergrads had a baby with a cleft lip and palate, and they all did surprisingly well, feeding her with the extra long bottle nipples.

    Bookmark   May 25, 2012 at 8:18PM
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bestyears

Oh isn't he a little cutie, and you have to love that "rock on" outfit!

    Bookmark   May 25, 2012 at 8:26PM
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leafy02

He's adorable and he looks super-alert. I know you know how fast they grow--enjoy these "tiny" days!

    Bookmark   May 25, 2012 at 10:55PM
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jlj48

What a beautiful baby boy! Congratulations!

    Bookmark   May 26, 2012 at 3:37AM
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Javachik

He is GORGEOUS! I wamt to kiss those cheeks, cradle his little noggin and snuggle the back of his neck. Please do it for me.

    Bookmark   May 26, 2012 at 7:22AM
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deee_gw

Thinking of you and your family. Thanks for the picture. I love his chubby cheeks! Will you share his first name?

    Bookmark   May 26, 2012 at 8:25AM
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lukkiirish

What a cute little guy! He seems so alert, love the brown eyes and chubby checks. LOL

Of course you are as proud, why wouldn't you be? He's gorgeous and more importantly otherwise healthy. So many things can happen with a new born, in the big picture this is just a little bump in the road. Thank God he's okay and so adorable.

    Bookmark   May 26, 2012 at 9:58AM
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judiegal6

Andrew we're calling him AJ.

    Bookmark   May 26, 2012 at 10:15AM
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lukkiirish

Welcome to the world AJ!!

    Bookmark   May 26, 2012 at 1:18PM
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dedtired

He is a beauty and perfect in every way that really counts. I wish I had pics of my friend's grandson. His cleft was much more pronounced than AJ's. Now after having it repaired, it is barely noticeable.

He IS alert for such a little guy!

    Bookmark   May 26, 2012 at 8:59PM
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anele_gw

Judie, thank you for sharing his pic. AJ is beautiful. He just melts my heart. Can't wait to hear more about him.

    Bookmark   May 28, 2012 at 6:03PM
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judiegal6

My girls, son-in-laws and grandkids just left after a nice Memorial day B-B-que. Little AJ had his first holiday get together (Italians, we have a lot of them). It's amazing to see your babies with babies of their own. DD isn't able to breast feed him, because of latching issues. She has to use a special bottle with a special nipple, and has to squeeze the milk into his mouth, mimicking the sucking motions. She has to pump 6-8 times a day because she want him to have breast milk. I'm so proud of her, she's doing a great job.

    Bookmark   May 28, 2012 at 7:32PM
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