Whether you knew about your child's diagnosis before their arrival or were surprised at birth, receiving a craniofacial diagnosis can be life-changing. You will most likely be bombarded with medical information and a mounting list of questions.
The task of caring for your child can seem overwhelming in the beginning, so we reached out to several CCA families to help answer some of the most common questions you might have as you start this journey. These are actual responses and are intended to inform only and are not CCA's opinions or advice. CCA is pleased to offer the names of contact families who have children with similar conditions upon request.
A. I needed to speak with someone who knew about craniofacial conditions, so I would know we could do this. I needed to hear positive things.
To see another child with the same thing...before/after pics...so I could see for myself that something could be done.
Finding someone that had a child with a similar condition for support.
A. Stay with the bigger hospitals and universities.
A geneticist was called in for us and he directed us to someone qualified...but knowing about CCA now, I would suggest information be with every birthing place in the country and distributed when a baby is born. Having access to another parent in the area who knows of local doctors (not just those networking with CCA) would be helpful too.
Research for the BEST hospital. We found that our local hospital wanted to learn; and did not have experience with our son (which hurt him in the long run.) He was dying in a medical transport helicopter. When he arrived at the hospital the doctors immediately knew the syndrome and answered all of our questions. Our son finally had all of help he needed.
A. Do they have written information about the syndrome so that the new parents can take it home and read it in their own time? How many of these surgeries have they done? Where did they go to school? Is there a chance that there might be internal problems with any organs or the spine? Ask if any of the charges not covered by insurance can be written off.
If they've worked on the same condition before...seen it before...prognosis etc.
What experience does the doctor have. Ask for pictures and references. Does the doctor work well with the team approach. Does the doctor listen to the parents feelings. The PARENTS know their child the best.
A. If you have good insurance, do all you can do to keep it. Try to stay away from HMO's and government run programs if you can. Private insurance has been better for us.
Until recently we didn't have to worry about this so I don't have much insight. However, if the child's condition is more serious than a cleft lip/palate, parents should definitely look into funding in their state to see if they qualify for special programs, regardless of income.
We found that insurance is very tough to get for our child, and the insurance company often raises its rates to get you off their plan. The only stability for our family was getting an entirely new job in the school system to provide decent insurance that covers our child's needs.
A. Insist that they listen to you and offer you a chance to appeal any negative decisions. These are not cosmetic surgeries.
It's a drag, but the best way to get it reversed is to appeal in writing as well as by phone. Use pictures, prognosis info, any medical info they may not have or if they have, highlight pertinent stuff they might have missed about your child that is clearly being disregarded for the decision.
Don't stop with the first or even second denial!
A. I wish I knew that this wasn't a hopeless situation. I wish I could have known how much happiness my kids would bring me and other people.
While I intended to keep good records and did for a while, I cannot say enough how important it is to keep the child's records organized and filed at home...getting copies of hospital/doctor records as you go (every year at least) and recording everything. Keep receipts, consultation info, insurance info, letters, everything! Also, photos after operations and keeping them in chronological order...I didn't keep up with all this and I regret it...it would be helpful now...years later.
With all of the pain and sleepless nights, this child will give back much love and a bond that is unconditional.
A. Being able to meet other parents and hear their stories so I knew we weren't alone in this and knowing that there are kind, caring people willing to help us whatever way they can.
I graciously "hung up" on people who called to say they knew something of what I was going through (we had a cleft lip/palate support group locally but mine had a facial cleft and I believed there was nothing in common). Once I got a handle on my situation I welcomed those calls and wished I had not pushed them away initially. ANY craniofacial condition has similarities if only for the fact that it's one's face/head. Talking with other parents and grown patients and especially when we got together in person, was the most therapeutic thing I experienced...when we were in public together, nobody cared who was staring because we didn't know which one they were looking at...we weren't alone. It's that old saying, "strength in numbers".
Friends that congratulated me for having a baby...not the feeling that you had just given birth to something unwanted.
A. Tell everyone who will listen that you want everything possible done to make your child happy and healthy. It is very important that we tell people we want any help we can get, because people treat our kids like we do. I have found if I treat my kids like the most important people in the world, others treat them better. In return my kids get better care.
People mean well when they tell you, "God wouldn't give you anything you couldn't handle." But, you'll hear that more than once and you'll think if you hear it one more time, you'll throw up, scream, or slap someone! Just know that you're not out there alone and that in most cases, what our kids have is not death defying. While everything is relative and if it's happening to your child you think it's the worst, you will see so much more out there, especially in hospital settings, that is far worse. Remember though, that it's ok to feel bad about your situation. Don't ever feel guilty for feeling bad. You'll learn to put things into perspective and there will come a day when you think your child looks great and because of what's been endured, has the world by the tail!
Talk to others and research your options. You know your child the best. Follow your instincts and believe in yourself.
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Children's Craniofacial Association
is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas. CCA's mission is to empower and give hope to individuals and families affected by facial differences. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.
© 2016 Children's Craniofacial Association