Sunday, February 9, 2014

If you Believe in it, then Fight for it

I have to vent...based on my experience.

It is unimaginable to me that some doctors don't look out for the best interest in their patients....why? I don't know...because it is so routine for them, because of money, or maybe some of them just don't genuinely care like we would like to hope. Well, I guess most doctors expect the parents to just take their word and go with whatever they say...but not this mom!

A little something I created to raise awareness. It's a picture of Alice's foot with a bracelet
my older daughter made for her. I love this seemed very fitting.

As a parent you put your trust into this doctor you are seeing and trust their judgement...but please don't take the word and opinion from the first opinion you get. That, to me, is the biggest mistake as a parent you could make.. Why jump into a surgery for your child based on one person's opinion? Why not get additional opinions? You owe it to your child to explore other opinions of qualified doctors who can treat your baby.You are your child's advocate, their voice. If I had taken the first doctor's opinion and not pushed for a second child's treatment and outcome would have been DRAMATICALLY different.

You have to remember that some doctors look at CVR (the open surgery) as such a routine thing, it's no big deal to's not their child! You would hope as a decent human being that they would look out for your child...and if your child wasn't able to get endoscopic surgery based on their typical endoscopic window, that they would say..." Hey I know a Dr _____ will do the endoscopic surgery past 3 months of age" ...but no, that is just not the case, as you would expect. You have to research and find that out for yourself.

My intentions from the start were to get my daughter the less invasive treatment she needed and not settling for the first opinion...I knew I would do whatever I could to avoid reconstructive skull surgery for my child by fighting for endoscopic. CVR may seem routine for some doctors, but not to the parents going through this. I started this blog and did the news story ( so that awareness would be raised about craniosynostosis...and so others would know that there are some doctors out there that offer endoscopic surgery up to 6 months of age...which I would have NEVER known if I had not researched it myself.

Parents...PLEASE get many opinions.You owe it to your child to get many opinions and go with the doctor that you feel is right in your heart...not the one that is closest or the one you first saw...don't take NO for an answer. You will run into road blocks, you will feel defeated...but I promise you, there will be such a huge reward for fighting for your child. I have never been more proud of myself than I was with how I handled Alice's journey. I knew what I wanted for my baby and I made it it wasn't easy but it was worth it. I am so grateful for all the people that were helpful along the way and for everyone's support.