Tuesday, February 11, 2014

"Living with Scars" project

Hello and Welcome to the Blog. Today we are celebrating our three year Birthday! It's so exciting to be able to connect with so many people on line through face book, our blog and through email.

I wanted to start a "project" to educate people on what congenital diaphragmatic hernia truly has come to mean to so many. My daughter is not at all shy about her scars. She knows that without them she would not be here today. I make an effort to kiss her scars and tell her how beautiful she is to me. The older she gets the more and more she understands that not many people have vivid scars like her. She is Blessed to be alive!

I hope that you will all join me in getting the word. Many times CDH is spoken in the cdh community and we all know the definition. However our friends and family rarely know that cdh is as serious and life threatening unless they walked the road along side of us. We need to educate the outside world.

Before I was pregnant with Ava I had never even heard the words... congenital diaphragmatic hernia. I had heard of "a hernia" in fact my Dad had one for years. It bothered him but wasn't that big of an issue. When the doctor explained at out 19 week ultrasound that this is what our unborn daughter had I was thrown off guard and wanted to protest. My other two daughters were born healthy and it just couldn't be. The more he kept talking the more I knew this was very serious. They offered termination and then it hit me... she was most likely going to die after or even before birth. I searched the internet with some VERY scary facts. I found no one that gave me a good outcome. I couldn't find any survivors. Surely there was someone out there? My husband urged me to stop looking online, instead I looked at top CDH hospitals. We found one that fit our needs and with much prayer and guidance settled on it. This hospital gave us what we so desperately needed... HOPE.

So when I started Raising Healthy Congenital Diaphragmatic Hernia Children, three years ago I knew I had to connect people and show them not only were there survivors out there but that most thrive after their long difficult births. Yes many have life issues such as feeding difficulties resulting in low weight, asthma, bowel obstructions, reherniation, reflux, scoliosis and many other things but they are still kids with LOTS of life to live!

Will you join us today?

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Here is my daughter Ava.

What do I think about when I see my daughter's CDH scars?

I have a feeling of complete gratefulness that she is here with us today. I feel very blessed! It shows how hard it must have been for her. It reminds me never take life for granted, that we are never assured tomorrow. I know that her scars are just part of who she is... a fighter in all sense of the word. I am SO proud to be her Mom!

A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm allowing part or sometimes all of the organs from the belly (stomach, spleen, liver and intestines) to go up into the chest cavity, compromising the heart and lungs.

I really appreciate all the CDHers out there. The Moms and Dads... you make it possible for the page to be a helpful to other parents. I started with only a few cdh friends and now it has exploded and we are in all parts of the world. Thank you so much for making the page and blog possible!

~Terri Helmick Founder and Creator of Raising Healthy Congenital Diaphragmatic Hernia Children


Raelyn said...

Happy third birthday/anniversary to your Raising Healthy CDH Children Facebook ministry, Friend!! I saw it this morning and love, love, love the idea!! Scars are beautiful!! I do not have a Facebook account--although some argue that I should!!--so I cannot partake in this. But I am also a super modest person and probably would not want to post any pictures of my stomach, anyway!! Oh well!! But here is something which I wrote about my CDH scar!! Oh yeah. It is taken from my never-going-to-be-published Life Story!! Enjoy!!
"Across my chubby abdomen is this lengthy surgically-created scar. Again, an indelible, visual reminder of a medical history which I--or nobody--had any control over. I have often found myself referring to this physical blemish as my battle scar. Which is not at all an inaccurate description!! Not at all. For this scar is an "imperfection" serving as evidence that I am a survivor. Somehow. Yet, I can touch this abdomen scar--run my fingers all the way down it--as an incredible reminder that "I've come a long way, baby". Because I have. See, I do not need any reminders to glance upward and thank God for my existence. An abdomen scar suffices just fine!!
Either I am "hard to kill" as that phrase goes, or our Loving and Sovereign God was watching over me. How about both?" --Raelyn

Joan B. Cronk said...

That's great of you to post your experience here. And I must say that your daughter is indeed beautiful. She must be a fighter to undergo all that in such a young stage of her life. You are lucky to have a daughter who is such a fighter and she is lucky to have a mother like you who doesn't give up. I came to know of diaphragmatic hernia only some time back. I didn't know that of the different types of hernia there are such fatal ones too.
God Bless you both and congrats on the 3rd anniversary of Raising Healthy CDH Children Facebook ministry.

Jak Manson said...

That is sad that these kids have had to get hernia surgery at a very young age. I am really happy that they have recovered remarkably though. It is very exciting to see these kinds of things.
Jak Manson | http://www.herniainstitute-la.com

obat hernia said...

very proud to have a daughter like your child, his life continues to struggle endlessly even though he has a very good mematikan.Ceritamu disease, may be a motivation for other people with hernias

Anonymous said...

Good for you! You have every right to be proud of your daughter and what she has gone through. I can't imagine what having a diaphragmatic hernia would be like. I have so much respect for people who have to go through these trials. We may not know why they happen in the moment but they make us stronger! http://surgerygroupsc.com/surgical-services/

Anonymous said...

I also have a daughter who not only survived the surgery, but is now well and a perfecly normal child. The scar is the only reminder of her condition. I am really glad I gave her the chance to fight for her life and survive this. As the author of this blog, I was also offered the option of terminating the pregnancy when I found out! I decided on the spot not to do it as I figured that she had the right to try and overcome this. It is true that the doctor told me she might not survive anyway... but as long as there was a chance I thought she should take it. My husband encoureged me by saying that other kids sometimes need surgery when they are older (after accidents or some other conditions) and nobody puts a pillow over their head just because they might not survive the surgery ! Now our little girl is 2 and a half and she is as active as any other child her age. God bless all the children who have to go through this and may God give their parents the power to be there for them!

Anonymous said...

I am a child who survived CDH and I have a scar an my stomach from the surgery. I personally don't care about it but I can get very self conscious about when I where a swimsuit or I'm changing in the locker room because from the corner of my eye I can see people staring.

Fleming Francis said...

Hey... I had CDH too... Was surgically cured which left a 6 inch scar... I'm 18 now... The scars have never bothered me... In fact my mom always makes me feel proud abt it. The funny thing is that I have situs inversus too...