Craniosynotosis

Oh sweetie,
im so sorry to hear this. Terribly sorry. :0(

I am pretty sure that your father in law is just worried about your precious son, and his 'answer' is to skip out on the surgery. People react to such news in different ways. And of course these ways aren't always good ways. I know this first hand as we have been through some very traumatic things the past 2 years.

In 2007 we had a baby girl born that had the same thing, along with other medical problems. We were facing many surgeries for her head in the future - unfortunately we didn't even get to make it that far with her. I am NOT saying this to scare you at all. She passed away from things COMPLETLEY UNRELATED to the carniosynotosis. So please don't add extra pressure and stress to yourself from our 'story'.

From what we learned while we began talking about such surgeries is that these dr's are AMAZING! They can perform such surgeries on these little ones with GREAT sucess.

My heart does go out to you because I know how stressful this can be. We have had four babies - our first was born 8 weeks early, our second was born 6 weeks early and had a genetic disorder - which is why she passed away - nothing to do with the craniost. I promise!! - our third was born with a congenital heart defect called svt and is looking at having surgery on her heart when she is around 3 yrs old and our 4th was our first full term, healthy baby - though is now deaing with severe reflux. So unfortunately I know how it feels to be completely overridden with stress when it comes to babies.

I would be open to you emailing me if you need a shouder to cry on or someone who will just listen. Send me a PM if you feel like talking...

Hugs to you tonight...
God bless
Kelly

My lil guy actually just went through this on Jan 8th. He is smaller (3 mos at time of surgery) so they were able to do a different type of endoscopic procedure. Where are you located? I am in SLC and we went to Primary Childrens. Our Dr's were Dr. Faizi Siddiqi Chief of Plastic Surgery and Dr John Kestle Chief of Pediatric Neurology. They ordered an MRI and confirmed that our son would need to have surgery. Not what the mother of a brand new baby wants to hear. They were wonderful with Caleb and with reassuring us of our decision. They did not pressure us and answered all of our questions in detail. What type of craniosynotosis does your son have? Caleb had Trigonocephaly which is basically where the metopic suture fused (forehead) too early. If you looked down onto his head it looked like it went into a triangle and his eyes looked like they were pinched and too close together. He is now 5 mos and is healing very well. He has to wear a helmet for 9-12 mos to make sure that everything rounds out the way it should. He also had a bit of a flat spot on the back of his head.

It is still scary no matter what! Be sure to read about craniosyntosis and also about your doctors that will be performing the surgery. We were able to find articles our doctor had written as well as finding blogs by other parents who had children that were his patients. Look at pictures and be aware that your little guy will be swallen and that you won't be able to hold him right away. That was the hardest for me other than handing him over to the doctors to go into surgery. Try to stay positive because he will be able to sense that Mommy is scared. Also, don't worry about Grandpa. Knowledge will be your best ally when talking with anyone about the situation. He is just as worried as you are and probably feels even more helpless. If you think it would help, have your husband talk to him and see what concerns he might have. You can also address those with the doctors and then follow up with him on the answers.

One more thing, keep open communication with your hubby. This is going to be a very difficult time for both of you so be sure to stay close to each other. You are going to be the best support system for each other because you know how each other thinks. You will be able to help ease your husbands fears and he will be able to help ease yours. This is also no ones fault! Mommy didn't do anything wrong when she was carrying baby. This happens to 1 in every 2000 babies and mainly happens to boys. I haven't found the reason why but just know, you didn't cause this to happen. Calebs bones began to fuse before he was born. My OB and pediatrician both confirmed that no matter what vitamins, what foods, etc I would have chosen this still would have occured.

Before I go into too much more detail, I'll wait for your answers. Please feel free to email me if you think of any other questions. I will try to answer them the best that I can.

Hi!
My boy, who is now almost 9, had sagittal craniosynostosis. He was born with it. When he was 4 months and 10 days, we had the surgery done. It was scary, it hurt, and he bounced back so very very fast. It was amazing to see how round his head was. For sagittal, the fusion makes his head narrow, and so the cranium, and brain, are pushed "out" (bossing) to the front and back. My son's skull closed again, but his head is almost normal, nothing a little bit of hair cant fix. If left untreated, it can eventually result in slowed/damaged brain growth/development. I am surprised it took so long to diagnose. Is your father-in-law, a doctor? I would seek a second opinion, but you need to act quickly. The skull will stop growth at 1 year I believe it is, ( I may be wrong) but the floor of the skull sets..and then the repair work will not be as successful. So, if you are going to help him, now is the time to act. Be stern about pain control, ENSURE that he has meds on board for a few days. Do not let anyone tell you he does not need anything, he will, and right away. I slept with my son, I held him for 3 days straight, so I was acutely aware of any pain he felt. So, seek advise and definitely a second opinion. BUT NO NOT WAIT to do that!! You r window is already getting smaller ..I wish you the best of luck, and yes, it will hurt him now, but he will thank you, and you will thank you, later. Just be sure you make the right decision, based on facts, not emotion. I KNOW it is hard. Trust me. I have been there, and then some. My son also needed a heart transplant at age 2 1/2. I totally get why you are torn. Write back if you want to! Best of luck to you and your son!
W.

My son was diagnosed with right coronal craniosynostosis at the age of 9 months. He is now a 2.5 year old beautiful little boy! Your son will be fine in time! That is not to minimize what you are going through, b/c boy did we have the same feelings as you do now! Feel free to email me at ____@____.com if you want someone to talk to! If you are close enough to DC, try to see a neurosurgeon named Dr. John Myseros with Children's National Hospital. He is amazing!!! I can't speak highly enough about him and his skill with this type of surgery.

As for the actual surgery, it is a tough time - I won't lie to you. But, for your son the "hard part" will only last a few days at best. My son was in the hospital for 4 days (eyes will be swollen shut), but when he was released he was "back" to his old self - playing and eating and sleeping just like any other kiddo. It will take you a bit longer to recover from the experience than it will him!

Please be assured that you are NOT alone! Feel free to e-mail and we can chat, I can show you pictures of my son before/after, and help you through if you want!! Lots of luck!
K.

P.S. one more thing - when your FIL tells you NOT to do the surgery - tell him the facts - that not doing the surgery may cause brain damage due to the impact of a growing brain not having anywhere to grow which causes too much pressure. NO ONE wants to cause their child retardation b/c they are scared of this surgery!

I got no answers, but I hope you look for a society or support group that deals with this. They can help emotionally and also with the 'been there done that' experience that only parents of children in similar condition can offer. I looked online and found these:
http://www.craniosupport.info/

http://www.mdjunction.com/craniosynostosis

http://www.faces-cranio.org/Disord/Cranio.htm

and there are more as well, I only copied the first 3. Find other families in same condition and see what they did and what worked for them. Go into research mode and try to distance the emotions for a bit. Find out everything you can about the condition and treatment options, etc. Better educating yourself will allow you to look at the facts with understanding and know that if he needs surgery, then yes he does need surgery and you can tell your father in law that he is wrong because of xyz. Get the knowledge and seek the support.
Good luck - I'll send up a prayer for you and your family.

J.

I am so sorry for everything you are going through. I do not have a lot of experience with this but at an early appointment my son's dr sent us for an xray because she was a little concerned and for just those few hours before I found out the results I was crying and worried sick. The xray came back good for us but it is very scary. I think the best thing you can do is arm yourself with some knowledge which always disarms fear. This will be difficult for you and your son, there is not doubt about it. As far as your father in law - older folks sometimes just do not get it. As hard as it is, just let him know politely that the xray shows he needs to get it done and offer to show him the xray - you may even want to explain to him how difficult this is for you and you would appreciate any and all support. I wish you and your family the best.

I am sorry you have to go through this. I am not familiar with craniosynotosis, what exactly is it? What would happen if you didnt go through with the surgery? What is the survival rate? Etc.. Did you get a second opinion?

As far as your husband's father, maybe you could say something like, "Yes, this is hard on all of us and none of us want to believe that he needs it, but it's time for you to realize the doctor's aren't conspiring against us-they're looking out for my son, and we are getting this done." If it gets taken as being rude or something, I wouldn't worry about it. You wouldn't be attacking him personally, and I think that's probably the real problem--that he doesn't want to believe his grandchild has to go through this. As far as the surgery, I am so sorry for you. I have a friend at church whose daughter was diagnosed with this, and it was so hard for us all to see this sweet gorgeous little girl going through this. That was a few years ago, and while it was hard, the little girl is absolutely fine now. She probably still has a scar across her head, but it's covered by her hair, and she's all smiles so no one would ever know unless they looked for it or someone who knew told them. Oh, and if your father-in-law won't respond to what I mentioned earlier, or something similar, maybe you should just be honest with him and say it's stressful enough without his comments, and you'd appreciate him keeping them to himself. If he won't comply, try talking to him less, etc. I'm sure everything will be fine, but I know it's stressful now, and you don't need anything adding to that.

Have they only done xrays? This was a concern with my son at birth. He was born with the cone head, as I understand most vaginal birth babies can be. But, even after 3 days, it didn't get better. The hospital took xrays & that Ped told me the same thing. We saw our family Ped & a Pediatric Surgeon. We had the fear of surgery also. But, more tests were done, I believe it was an MRI. Get more tests & see a specialist. It still may be true, I sincerely hope not. We had to visit the surgeon every couple of months for the first year. I worried every time that something would be wrong. My son is now 7 & fabulous. And, as scary as this seems, I understand that the procedure is fairly routine. I know, it's your son's head, there's nothing "routine" about having surgery.
And, ignore your FIL. It seems that he may be trying to help and may not understand that he's not.
Best of luck.

As others have said: you need to move quickly. This diagnosis is not equivocal and is quite obvious to physicians. The surgery SEEMS extreme, as will the approach for a 9 month old, but it is astounding how quickly tiny children bounce back after the first 2 days in the ICU. Just astounding. Prepare yourself with understanding the process, and how you will be undone those first two days, but be able to realize you have saved your child's future by getting this done ASAP. Focus on your child and husband for now and completely ignore your f-in-law. He will understand later; you can not wait. Three friends encountered forms of this problem--some are due to full genetic syndromes and you should have your child tested to be certain that other or more things are not involved that you would wish to focus on later. All of these friend's children are thriving, and have avoided mental retardation and death which would have eventually been their fate. I am sorry to hear you will go through this surgery and after so long a time of not realizing this would be the case, but you will all be fine. Schedule now at a large pediatric center like Hopkins unless there is one closer to you in WV! best wishes for speedy success. Please do not wait any longer to get high level expert opinion and care.

I just wanted to tell you how much I feel for you. When my own baby was very sick, around the same age, my life felt like a nightmare. I think I aged ten years in those months.

The only thing that helped me was reading everything I could about her condition (once we figured out what it was). That will help you feel more in control and also to have some response when people, like your father-in-law, question your judgement.

Your father-in-law doesn't understand craniosynotosis. Perhaps you or your husband can try to explain to him what the surgery entails. Keep trusting God. AF

I am assuming, since you asked how to be nice in your response to your FIL, you did not punch him in the jaw. So my first instinctive response is out.

1. Your child's care and medical measures is a matter to be decided between you and your husband. Your FIL, unless he is a pediatric specialist, has NO input. And even then, he should limit it to direct responses to your inquiries. I find it commendable, that though he shows not caring for kindness or appropriateness, that you do not wish to stoop to his level.

2. My own son's battles have been very different from what your son is facing, but I have found literature that is digestable by the general public and passed it along to family members with the understanding that they may or may not read it. While I am in the depths of performing my own reasearch and soothing my own concerns, I do not have the energy or the compassion to educate others who do not care enough to read a pamphlet.

3. As for polite tactics, you could ask your husband to speak with your FIL if you don't prefer to do it yourself. The tone should be something like, "We appreciate and expect your concern and support as our family faces some tough decisions and difficult times ahead. However, this is not the time to be undermining our parenting and that negative energy is not something we will be able to tolerate." I think the implication is clear: If you don't want to be supportive, then go away.

I wish you and your son the best.

I'm sure its very hard for you and your family and i will put your son in my prayers. just let your father-in-law know that you know he loves his grandson and wants whats best for him but this is a descion that you and your husband have to make, I only ask that you not say it in a way to hurt his feelings.