Thursday, June 30, 2011


A confusing and difficult problem or question.

Or a word that describes my current state of mind when having to think about Ella's next step down this "path" of facial reconstruction. As most of you know, we had Ella's cleft lip repaired when she was 4 months old and her palate repaired at 10 months old.

I choose to say path surrounded by quotes because I would say this process has been anything but. From the time we found out Ella would be born with a cleft it has been our responsibility to prepare and educate ourselves, with very little guidance.

At my job I am expected to be the expert and provide my clients with a plan that will garner the most successful outcome. I guess I thought that since surgeons have to go through many more years of schooling than myself, that their job expectations would be the same. He would tell us what was best for Ella, lay out the risks and rewards and we would move forward with his recommendations - yet, here we are in the drivers seat.

Don't get me wrong, we love our surgeon and think he has done an amazing job on Ella's repair.
[BEFORE                                    |                                    AFTER]

However at this point he will not tell us that Ella needs a surgery and has said that as her parents it's our decision. To willingly put your child under the knife, especially after seeing them suffer in the past, is a very hard thing to ask a parent to do. I understand that everything surrounding her well-being is our decision, but it would be nice to know what others would do in our situation.

As her parents, we think she looks fantastic and barely see her lip (which I have talked about in the past)- however, I am not dumb and know that others see it very clearly. Her speech continues to get better every day, so how do we know when the time is right?

Do we wait and hope the kids don't pick on her? What if she looks back and is mad that we didn't do something sooner? Do we do it now/sometime soon and maybe need to go back in again, causing more unnecessary surgeries? Why can't people/surgeons make these decisions for me? Right or wrong - at least I could blame someone else for the outcome! 

I think the moral of the story is ….no matter what, parenting is HARD. When I first found out I was pregnant a very dear friend of mine said, "Congratulations - now you can f#ck 'em up in your own special way."

In times like these, i have to tell myself that no matter what decisions we make and how hard we try to make Ella's life perfect - she may hate us anyways, so we'll do our best and cross our fingers!


  1. I read this and felt the need to respond. First of all, you are a fantastic mom. Ella will feel like the luckiest girl someday. Maybe not through those teenage years ;) but someday she will thank you for being so wonderful.

    As for the advice: please understand that this is coming from the teacher in me.It is a hat that I can never take off, even if I want to :) If it were up to me, I would go through with the surgery. Ella is gorgeous. She has a phenomenal personality. We know that kids will always find a way to pick on other kids and it is heartbreaking. My thought is why give 'em another reason? Obviously you will teach Ella to love herself no matter what and my hope for her is that she goes through life knowing that beauty comes from within. Still, growing up can be so painful at times. When you said that you wondered if someday Ella would wonder why you didn't do another surgery, it really stood out to me. I wonder if it would be a surgery she would want to do for herself when she was older because she might worry that everyone would notice that she did it (if that makes any sense). Plus it is so hard to take time to recover when you are older and have so much going on. From my perspective, this is your chance to make that decision for her so that she doesn't have to go through an obvious and painful surgery when she's older. She can have it now and it won't even be a memory and she can have her amazing parents to take care of her. This is just my silly old opinion. At the end of the day though, you can't go wrong no matter what you choose because Ella is one fantastically amazing kid and YOU did that!!!!!!!!!

  2. I'm going to have to agree with every word that Jen said. I don't really have an answer for you, but I have been in your shoes, and know it's a tough place to be. I felt the need to comment.

    Although my sons cleft lip was merely cosmetic from birth, we knew we wanted everything "perfect" as can be before he'd be at the age to remember. I had the same internal struggles, the non-existent scenarios of will he be made fun of when he's school age, and the obliviousness to his cleft; but sometimes we just have to take a few steps back and fight the internal demons that make us think we are putting our kid through unnecessary pain or troubles when we are really being the best parents we know how to be. Of course we question everything from having major surgery to should they watch Sponge Bob cartoons. No matter what the decision, it's the right one because you are her parent and you have her best interests at heart. Always. If you didn't, then that's when I would worry.
    Your decision will be the right one no matter what. I am glad you posted this. It's an awful situation to go through, but just know that you aren't alone. Talking about it helps and knowing there are others out there is hopefully warming to you. You guys will be in our prayers.

  3. As a mom who's been through this (my 9 year old son was bclp) and is still going through it, here's my opinion, for what it's worth! You are the mom, you know your child. You can't possibly know what situations will arise in her life, what her struggles will be, etc. You WILL make the right decision because you love your daughter, so put those worries aside as best you can.

    My son's cleft team strongly advised us to delay any "cosmetic" (of course, nothing for our kids is cosmetic) surgeries until he asked for them. He had 3 surgeries as an infant to close the lip and palate, and a bone graft to repair the alveolar ridge at age 8. He's also had several surgeries for ear tubes. He remembers every surgery he's had since he was 3, usually with some humor attached. He's a great kid.

    I didn't realize how much his face would change as he got older. There was a very dramatic change in his face around age 7 or 8, after he had a growth spurt. It frankly made his repair less obvious. We are considering a lip and nose revision now because my son has asked about it. We visited the plastic surgeon, who answered all of his and our questions and reiterated that it is most important that it be something that our son wants. He's still thinking about it and has all of the information (especially regarding the after-care, which has a great impact on the scarring and his post-surgical activities.) We wholeheartedly support him in whatever decision he makes.

    I wish you the very best of luck with this and applaud you for everything you are doing for your daughter.

  4. Thank you ALL for your comments - there is no better feeling to know that people are willing to read my crazy thoughts and then take the time to comment/share their stories. It's also amazing to hear from those who have gone through the same things. I truly appreciate it!

    Happy July :D

  5. You are a amzing mom and Joe a equally great dad! Jen said it best, and no matter what you do, you are going ot second guess yourself the whole time. No matter a great or not so great outcome. Ella is a AMAZING child, she has a "no holds barred" personality and love her for it! You can research everything on the online and either be scared sh*tless for what you read or get some great information and advice. Trust me the dr's surgeons are never going to give you the answer you think you want. We chose to follow the dr's advice and go with the partial amputation for Derek last year, now we wonder if the full "might" have been "better" with all he is dealing with now. Who knows, I cant imagine making that decision last year, we did at the time what we thought was best. You just do not know. You have to do what your gut as a mom tells you to do at the time and all you can do is hope that it is right!