Where do I begin . . .?

[momof5]

Today's my first day back from maternity leave and I just found this forum while doing a google search on my baby's condition. I was beginning to think she was the only one in the universe who had it. Talya is four months old and my husband noticed that her eyes were "uneven" the moment she was born. After being told by 2 pediatricians that we were just obsessing and her head would straighten out on its own, we saw a neursurgeon who instantly diagnosed her with unilateral coronal sysnostosis. She's scheduled for surgery in October and I have a million questions and concerns, foremost among them:

Is anyone familiar with the craniofacial team at NYU?
Any experience with Dr. Thorne?
Should I seek a second opinion?

Besides for the practical questions, I feel sad and helpless all the time and totally unable to enjoy my baby because all I do is worry about her future. She's my fifth child and I've barely stepped foot in a doctor's office with any of them, aside from the occasional strep throat. You all seem so brave and supportive - I'd really appreciate any advice you could offer.

Thanks in advance.

[charliesmummy]

Hi momof5
Although i cant answer your questions i just wanted to welcome you to this site.
I felt exactly the same when Charlie was born, he is my first child and i just kept thinking 'why me?', 'Why Charlie?'.
I felt sooooo alone until I found this site and CAPPS and havnt looked back since. Everyone is fantastic and im sure there will be someone here that can answer your questions. We are all here to help one another as you will find out very soon.
Take care
Jacqui & Charlie xxx

[Janet]

Hi there,

Just wanted to Welcome you...this is a great place to vent and find advice. My daughter is 5 months with metopic cranio and I feel exactly like you do.

[Katie]

Welcome to CK, I'm so glad you've found us! :hugg I'm not familiar with the Dr you mentioned so unfortunately I'm of no help there. As for a second opinion, it all depends on how comfortable you feel with the diagnosis and the Dr. you're seeing. If you feel like he is experienced, and you agree with the diagnosis then stick with him. If for any reason you do not feel comfortable with this Dr, then it certainly couldn't hurt to get another opinion. You've got to go with what your mommy instinct tells you.
I know you're worried, scared, and sick over this (I think we all were when we first heard the news), but you will be amazed by how quickly these kids recover, and how fast she will be back to herself.
I know you're scared, we're all here for you :hugg

[MikenAustinsMommy]

Welcome to the board. You are definately not alone. My son, Austin, was diagnosed with Right Coronal Craniosynostosis at 6 weeks old, had surgery at 4 months and is doing wonderfully now. Here is a link to some doctors in New York (not sure how close they are to you) should you want a second opinion.
http://www.cappskids.org/NewYorkState.htm

[momof5]

Thanks for your warm responses. It's so great to know there are other moms to talk to about this. I'm at a loss about how to handle telling my close friends and even family members about my baby's condition. I'm not sure if they even notice the asymmetry and I find myself scrutinizing people's expressions when they look at her. Did you feel obliged to tell them all the gory details or simply say that your baby is going to need surgery?

Also, MikenAustinsMommy, do you know why Austin had his surgery at 4 months? I believe Talya has the same condition and her doctors have recommended waiting till she's 9 months.

Thanks, again.

[MikenAustinsMommy]

There were days when I felt like telling the world about Austin's condition and other days when I felt like if I even talked about it I would break down and cry. I never felt obligated to tell them anything really, but I did tell them anyways.

Every plastic and neuro surgeon team has a different theory about when it's best to do the surgery. Austin's plastic surgeon likes to do it at 3 months, whereas his neurosurgeon likes to do it at between 6 - 9 months, so they compromised. Austin was 4.5 months old.

[Jennifer]

I agree w/ what Heather said. Some days I went into to much detail w/ some people and some days I was just very casual about it and let people ask if they wanted more details.....It's what your comfort level is. As for timing of surgery, every doc is different (again, like Heather said). The NS/PS we used, wanted it done as close to 4 months as possible, the 2nd opinion we got said they wouldn't do it until at least 6 months, ideally 8 months. Emily was also 4.5 months when she got it done. I don't think any one doctor is right or wrong- I've heard positives reason of both ages....

[mom2mykidos3]

As far as telling people the only advice I have is it seems that when you tell people that your baby is having surgery then they want to know why. I always told people that Miriam was having surgery on her head because her bones were fused.
The only problem I had, and I know I have heard here other times, is that everyone makes it out to be no big deal. It is really frustrating because to you as the mother it is a HUGE deal, "They are cutting my childs head open!!" Just trust your instincts it sounds like they have got you this far.

[momof5]

As far as telling people the only advice I have is it seems that when you tell people that your baby is having surgery then they want to know why. I always told people that Miriam was having surgery on her head because her bones were fused.
The only problem I had, and I know I have heard here other times, is that everyone makes it out to be no big deal. It is really frustrating because to you as the mother it is a HUGE deal, "They are cutting my childs head open!!" Just trust your instincts it sounds like they have got you this far.

LOL - that is EXACTLY how I feel. I don't know what I want - if people are concerned I feel like theyre overreacting and treating her like she's not normal. If friends say it'll be fine, I get mad because I feel like they have no idea what i'm going through. At a friends child's birthday party I got upset over something minor, and had to leave because I started crying and couldn't stop. I feel like a different person these days.

[mom2mykidos3]

Just know we know what you are going through. My sisters baby is only 3 months older than Miriam. I always have a hard time seeing her. I want Miriam to be like her. Miriam is behind and it is so frustrating, I can't help but think, "Why my baby?".
How are you feeling about your doctors now? I hope you feel good about it. That is my only advice. I don't know what I would have done if I didn't have full confindence in him. I hope you get the answers you need.
You are in our prayers.

[momof5]

Yes - one of the toughest things for me is accepting that she may not live up to my lofty expectations for my kids. I'm a total perfectionist and overachiever and never even considered that I'd have a child that is less than fabulous at everything. My other kids really are outstanding - beautiful, smart, talented, completely independent, and all i've ever felt for people whos kids were, shall we say, a "challenge," was pity and gratitude that I've got it so good. Now that's me and I have no idea how to deal with it.

As for my doctors, I like them a lot - great personalities in addition to being highly qualified. I guess that's the best I can hope for - the rest is in g-d's hands, right?

[mayashekhina]

I can so relate with all that is being expressed here, I have also realised that it is how we choose to look at things is how we define our own experience.

I choose to see Betty as one of the most inspiring people I have ever had the blessing,opportunity and pleasure to get to know -to have faced everything she has and to have survived with a beaming smile makes me so humble. Sure she is behind, Sure its hard when I see other kids with all their advantages (gosh I have 6 of my own) but I dont let myself feel sad and sorry for too long because I remember what a unique little fighter I have, doctors dont know why some children survive and some dont but I choose to believe that my baby girls will must be so strong to still be here regardless of the hurdles she has had to overcome. And perhaps more stronger than alot of the so called "healthy normal" kids we are surrounded with. Our Betty is a tried and true diamond and that is what I always try to remind myself when I start to feel down about the hurdles that keep her separated from the majority of the population. And I do my utmost to provide her with every opportunity I can afford her to become all that she can possibly be.

I get upset actually when people say oh the poor thing because I dont see her that way at all and I feel it somehow nullifys all that she has fought and over come, Id prefer to hear what an amazing spirit she has or what a wonderful child because that is how I see her, why mourn if she doesnt?

(oops) Ok I got carried away

[Jennifer]

Perfectly said Racheal!

[momof5]

Perhaps so, but I'm not that brave or good. I just want her life to be easy - I'd rather she didn't have to be a fighter. Maybe I'll develop a better attitude with time, but for now, I just want to go back to that first day in the hospital with her right after she was born, when I was so thrilled with my perfect baby girl. Ignorance was truly bliss.

[Ethansmommy]

We always want the easiest life for our little ones. It's our job as mommies to want the very BEST for them! Every once in a while we get a special job description that seems too hard at the time, but with a little support we can get through anything. We are here for you!