The Begining of our CDH Roller Coaster Ride.
I remember so clearly the day I first learned about the devastating birth defect CDH (Congital Diaphragmatic Hernia).The birth defect that approximately 1,800 babies are born each year and 50% of babies born with CDH die.
It was a beautiful September day. The sky was a vibrant blue and the clouds looked like big fluffy white cotton balls.The sun was shining and the birds were chirping. I thought to myself what a perfect day for my ultra sound of our unborn baby. After all today was the day we were going to find out the sex of our baby! We were so excited!In all honesty CDH never crossed my mind. I was completely unaware,completely clueless.
Completely clueless that in this day our life's were about to change and we were going to be taking the ride of our life's. That no parent wants to take. The dreadful CDH roller coaster ride.
After my ultra sound we left still completely clueless. We were on cloud nine! We were having a boy! I know this news pleased my husband after all since day one he was so sure of himself that we were having a boy. He likes to be right ;-)
It wasn't until later. Fifteen minutes past seven my phone rang. I looked at the caller idea and did not recognize the number. I picked it up "hello" this was unusual for me on any normal day I would let it go to my voice mail if I did not recognize the number.
On the other end I heard my Doctor's deep Russian accent "is this Amber?"I immediately new that something was terribly wrong when I heard his voice. No Doctor ever calls you personally unless it's bad news.I tried to hold it together and he began to explain in his deep Russian accent. "that our baby boy was very very sick....this is very bad news" I couldn't hold it together tears began to roll down my cheeks. I had such a hard time understanding him between me sobbing and his deep Russian accent. The only thing I could make out was "Congital Diaphragmatic Hernia"
That is when our CDH roller coaster ride began fifteen minutes past seven, September 20,2008.
Between my tears I managed to ask my Doctor if he could please call my husband at work and explain all of this to him. I knew that I was a wreck and wouldn't be able to remember everything that the Doctor just told me. You know what that Doctor had the nerve to say "yeah but we need to make this quick I have been at work all day" WHAT? are you kidding me? I could not believe my ears. This is a man who just told be that our unborn baby is going to die and all he could think about is getting home to his wife and kids!
I hung up the phone. I never spoke to that Doctor again. Unfortunately my husband had one last unpleasant conversation with the Doctor. I would hear all about there conversation later in the mean time I collapsed to the floor and sobbed. Asking god "Why?why?why our baby?"
The most beautiful day was turning into a nightmare. I felt like someone just ripped my heart out and stopped on it until it broke into a million pieces. I only recall feeling like this one other time in my life and that was when my Uncle was brutally murdered.
At that very moment I felt alone. Alone with CDH.
Once I was able to pick myself up off of the floor. I went straight for my computer and googled Congital Diaphragmatic Hernia.That is when I began educating myself on this horrible birth defect. I found a few sites that were helpful and began to read stories of other babies born with CDH.
That is when I discovered we are not alone with this horrible birth defect. Many have faced the CDH roller coaster ride before us and many will face a similar ride after us.
In the middle of my research,in the middle of my tears I stopped for a moment to call my dad. Crying I explained to him what I just learned. He replied "oh hernia that's no big deal,lots of people have those they are easily fixed" Obliviously my dad has never heard of CDH. It was obvious he was thinking of a hernia not Congital Diaphragmatic Hernia. He was just as clueless as me.
I heard the sound of the front door open.
It was my husband home from work early. I leaped into his arms and cried, We held each other for awhile before he went into detail of his conversation with that Doctor. I was hoping and praying that maybe I didn't hear the Doctor correctly. After all he had a deep Russian accent that was hard to understand.Unfortunately I did hear him correctly our baby is very sick.He most likely will die and if he does survive who knows what quality of live he would have. That Doctor did suggest one option to my husband that he didn't suggest to me "we should abort our unborn son." I was floored! I couldn't believe my ears! I didn't even think that any Doctor would do an apportion at twenty weeks gestation.
After my husband went to bed I stayed up researching,crying,vomiting. Yes vomiting! This whole thing was making me sick! I didn't sleep a wink that night. I read story after story of babies who lost there battle with CDH after each story I would cry,vomit and get right back on the computer. I don't know if this was healthy but at the time this is what I needed to do.
Then I found hope. I stumbled upon Owen's story. He was born March,2008 with RCDH. At the time Owen was a happy healthy six month old. He was a survivor and born at Legacy Emmanul hospital.The same hospital where my Owain would began his fight. His story gave me hope. Hope is what we needed.
The next few months as we prepared for our son's battle for the fight of his life. We prayed and hoped that our son Owain would be a survivor.
You all know the out come of Owain's CDH roller coaster ride. We were fortunate that our son is a survivor and that is when survivors guilt kicks in.
The last fifteen months we have been blessed to have Owain in our life's. He brings us so much joy and I am so proud him. With everything he has been through. Three hospital stays,three surgeries it hasn't slowed him down.He is a happy little boy who loves life!
When I hear of a baby born with CDH die. It just breaks my heart and I ask God "why?why?"
Why does any baby born with CDH die?
I know that we can't erase CDH period and make it so no baby is born with this dreadful birth defect.That it is something that happens. Know one knows why? but it happens just as often as Spina bifida and Cystic Fibrosis yet know as ever heard of.
That needs to change!
We need to join together and help raise CDH awareness!
It was a beautiful September day. The sky was a vibrant blue and the clouds looked like big fluffy white cotton balls.The sun was shining and the birds were chirping. I thought to myself what a perfect day for my ultra sound of our unborn baby. After all today was the day we were going to find out the sex of our baby! We were so excited!In all honesty CDH never crossed my mind. I was completely unaware,completely clueless.
Completely clueless that in this day our life's were about to change and we were going to be taking the ride of our life's. That no parent wants to take. The dreadful CDH roller coaster ride.
After my ultra sound we left still completely clueless. We were on cloud nine! We were having a boy! I know this news pleased my husband after all since day one he was so sure of himself that we were having a boy. He likes to be right ;-)
It wasn't until later. Fifteen minutes past seven my phone rang. I looked at the caller idea and did not recognize the number. I picked it up "hello" this was unusual for me on any normal day I would let it go to my voice mail if I did not recognize the number.
On the other end I heard my Doctor's deep Russian accent "is this Amber?"I immediately new that something was terribly wrong when I heard his voice. No Doctor ever calls you personally unless it's bad news.I tried to hold it together and he began to explain in his deep Russian accent. "that our baby boy was very very sick....this is very bad news" I couldn't hold it together tears began to roll down my cheeks. I had such a hard time understanding him between me sobbing and his deep Russian accent. The only thing I could make out was "Congital Diaphragmatic Hernia"
That is when our CDH roller coaster ride began fifteen minutes past seven, September 20,2008.
Between my tears I managed to ask my Doctor if he could please call my husband at work and explain all of this to him. I knew that I was a wreck and wouldn't be able to remember everything that the Doctor just told me. You know what that Doctor had the nerve to say "yeah but we need to make this quick I have been at work all day" WHAT? are you kidding me? I could not believe my ears. This is a man who just told be that our unborn baby is going to die and all he could think about is getting home to his wife and kids!
I hung up the phone. I never spoke to that Doctor again. Unfortunately my husband had one last unpleasant conversation with the Doctor. I would hear all about there conversation later in the mean time I collapsed to the floor and sobbed. Asking god "Why?why?why our baby?"
The most beautiful day was turning into a nightmare. I felt like someone just ripped my heart out and stopped on it until it broke into a million pieces. I only recall feeling like this one other time in my life and that was when my Uncle was brutally murdered.
At that very moment I felt alone. Alone with CDH.
Once I was able to pick myself up off of the floor. I went straight for my computer and googled Congital Diaphragmatic Hernia.That is when I began educating myself on this horrible birth defect. I found a few sites that were helpful and began to read stories of other babies born with CDH.
That is when I discovered we are not alone with this horrible birth defect. Many have faced the CDH roller coaster ride before us and many will face a similar ride after us.
In the middle of my research,in the middle of my tears I stopped for a moment to call my dad. Crying I explained to him what I just learned. He replied "oh hernia that's no big deal,lots of people have those they are easily fixed" Obliviously my dad has never heard of CDH. It was obvious he was thinking of a hernia not Congital Diaphragmatic Hernia. He was just as clueless as me.
I heard the sound of the front door open.
It was my husband home from work early. I leaped into his arms and cried, We held each other for awhile before he went into detail of his conversation with that Doctor. I was hoping and praying that maybe I didn't hear the Doctor correctly. After all he had a deep Russian accent that was hard to understand.Unfortunately I did hear him correctly our baby is very sick.He most likely will die and if he does survive who knows what quality of live he would have. That Doctor did suggest one option to my husband that he didn't suggest to me "we should abort our unborn son." I was floored! I couldn't believe my ears! I didn't even think that any Doctor would do an apportion at twenty weeks gestation.
After my husband went to bed I stayed up researching,crying,vomiting. Yes vomiting! This whole thing was making me sick! I didn't sleep a wink that night. I read story after story of babies who lost there battle with CDH after each story I would cry,vomit and get right back on the computer. I don't know if this was healthy but at the time this is what I needed to do.
Then I found hope. I stumbled upon Owen's story. He was born March,2008 with RCDH. At the time Owen was a happy healthy six month old. He was a survivor and born at Legacy Emmanul hospital.The same hospital where my Owain would began his fight. His story gave me hope. Hope is what we needed.
The next few months as we prepared for our son's battle for the fight of his life. We prayed and hoped that our son Owain would be a survivor.
You all know the out come of Owain's CDH roller coaster ride. We were fortunate that our son is a survivor and that is when survivors guilt kicks in.
The last fifteen months we have been blessed to have Owain in our life's. He brings us so much joy and I am so proud him. With everything he has been through. Three hospital stays,three surgeries it hasn't slowed him down.He is a happy little boy who loves life!
When I hear of a baby born with CDH die. It just breaks my heart and I ask God "why?why?"
Why does any baby born with CDH die?
I know that we can't erase CDH period and make it so no baby is born with this dreadful birth defect.That it is something that happens. Know one knows why? but it happens just as often as Spina bifida and Cystic Fibrosis yet know as ever heard of.
That needs to change!
We need to join together and help raise CDH awareness!
:-) I cried when I read that! It is beautiful. I miss my Maxton so much but I know that he brought me into this CDH world for a reason and I am hear to fight and yell and scream until someone listens to me!!!! Thanks, I needed to read just what you wrote today.
Ashley
You wrote exactly how I felt when I found out. I was devastated and couldnt work for two days. I just sat and cried. I finally got up researched as much as I could. I found Claire's blog. Then I found more after hers. There was hope! I too feel survivals guilt sometimes. I ask why does this happen to God. I rock Nayeli to sleep at night and just cry holding her in my arms. I think of all the babies that have lost their battle against CDH. I tell everyone about CDH. I dont even care if they dont want to know I tell them anyway. Raising awarness is what I am going to do for the rest of my life.
Thanks for sharing this Amber, I know it wasn't easy. I can identify with you all so much. You're right, it's time we all step up TOGETHER to change this 50% survival rate.
Jen
I too feel the same...survivors guilt everytime another CDH baby dies...when I look at my daughter I think of all those angels. Why them? Why not mine? I am so incredibly thankful to have Emily everyday. She was diagnosed Aug 31, 2007 ...born Jan 22, 2008.
She is a gift from God!
Sue Kozik
Well said- we didn't find out Noah had DH until 31 weeks so we didn't have too long to dwell on it & once my husband starting look it up he strongly urged me not to so I didn't until after Noah was born...and once I did it was so devestating! I am SOOO ready to get on board with the Letters to CDH & anything else that can raise awareness!