CDH Awareness

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year).  The cause of CDH is not yet known.  The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale.  CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.  This inhibits lung growth.Every patient diagnosed with CDH is different.  Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available.  There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems.  A few of the survivors suffer from severe long-term medical issues.Every baby with CDH is different - like a snowflake, no two are alike.  What works for one baby, may not work for another.   There is no reliable indicator to predict if a baby will do well or not.   Babies with no diaphragm and little lung sometimes do well, while babies with 2 full lungs can sometimes do poorly.    Head to lung ratio is used to determine whether to intervene prenatally through in utero treatments but it does not indicate a true survival rate.  "Lung function" is also not an indicator as there are many other factors at work with these children such as kidney function, brain function, other birth defects, possible complications or infections while in the hospital, etc. www.cdhsupport.org  

Avarey Grace Champagne~Daddy's Lil Girl, Mama's Lil Angel

Where do I even start? This is the first time I have ever done anything like this, and trust me, I'm a rambler so this may take a while. My Avarey Grace is coming Feb 8th or 9th of 2012 and I couldn't be more excited and scared. My Fiancee, Kevin, and I first found out about Avarey's CDH on Sept 9th 2011. Let me tell you, there is nothing like seeing your first baby for the first time, then being told it's a GIRL , and then being told there may be a problem. Talk about something to bring you down. You spend the moment from the first time you find out your pregnant until the BIG ultrasound day imagining how your baby is going to look and what it is going to be, and then all of that is forgetten given a few simple words. It truly crushes your heart. Kevin and I had not heard of CDH until that faithful day and since then my whole world has been upside down. Avarey has left sided cdh and only her stomach and part of her intestines are up in her chest. Her heart is pushed all the way to the right, but it is full size, beating correctly, and pumping blood great! We have been told by doctor's that we have "the best case" for a "life threatening" birth defect. Being CDH parents we all know this still does not mean she will make it. I find that trying to explain it to people is one of the hardest parts. You never want to tell someone that you are having an unhealthy baby, and then further on trying to explain exactly what is wrong complicates things. As great as it is to hear "Oh babies make it all the time, babies that are born 3 months premature live to have perfectly healthy lives..."so on and so on. Or even worse, "Oh it's a simple surgery, babies are fighters, they always come out on top. She'll be just fine." No It's not OK, no it's not that simple. There are 1,000,000 things that could wrong, and the surgery is the least of the complications, she has to be able to breath in the first place. But people who are not CDH parents are supporters just don't get it. I know they mean well, but it's just not that easy. Or maybe this venting is just all the built up resentment.... I try to so hard to stay positive and i try so hard not to be angry, but it is nowhere near easy. Never in my life have I known what true heartache is till now. Never in my life have I ever cried to the point it hurts, and now it seems to happen day in and day out. I am finally moving forward somewhat, the mornings aren't as sad and the days don't seem as long. I know she still has a chance, but there is also that chance of what if. What if my angel doesn't make it, what if I decorate a nursery and no sweet baby girl to bring home to it, what do i do with all the cute pink baby clothes and the christening gown and her blankies? How do I ever move on? My support group from home is great, I could not ask for a better fiancee or grandparents for Avarey, but sometimes they don't can't quite get it. I'm her mommy, I'm suppose to keep her here, and what if I fail at that? Avarey's due date is fast approaching, as I much as I cannot wait to see her pretty little face and hold her tiny little fingers, I want to keep her inside as long as I can, that way I know she's safe. But until till I guess it's doctor appointments every week and a BPP test on Monday the 5th! (Prayers for that are more than welcome) And in the time being I'll enjoy every last kick,flip, and turn she makes and every last ultrasound screen I get to see her pretty face through! May God Bless each and every one of you!

Mommy Loves you Angel Avarey <3