My wife and I had a baby with the same condition 5 years ago. Just like to tell the family you’re going to have some ups and downs, but hang in there. Don’t give up. Our son is a healthy (but skinny!) 5 year old handful today. And don’t let it scare you off from having more.

Nearly 18 years ago, my son was born in Winchester TN, with a CDH. We found out about his condition when his doctor, Dr. Rex Hubbard, diagnosed him within seconds of his birth, saving his life. Because the small county hospital didn’t have a pediatric respirator, a special “Angel Flight” ambulance was sent from Vanderbilt hospital, in Nashville. For the two hours we waited for the ambulance to arrive, a young intern manually “bagged” my son, squeezing an oxygen bulb, pushing the precious gas into my tiny child’s compressed lungs. This intern, who’s name I never got, refused to give up, or take any relief, but continued for over two hours.
The doctors and nurses at Vanderbilt performed multiple surgeries and procedures and never gave up hope. The Air Force community at Arnold AFB, near Tullahoma embraced me and my young family and cared for us, and never allowed us to give up hope.

This May, my son Tyler, will graduate high school at Navarre, Fl. He’s played baseball, basketball, and was on the varsity football team this last fall. Last summer, he earned his blackbelt in Hapkido karate.
Miracles do happen.

We have a 5 year old that was born with the same condition. Although the first couple years was very hard, he’s doing great now. He’ll huff and puff a little more than other kids when he runs but there’s not much he can’t do.

We didn’t know that he had the hernia until after he was born, after 2 ultrasounds didn’t catch it. There were several times in the first month or so when we weren’t sure if he was going to make it but lots of prayers and support did the trick.

I have to give kudos to Dr Tuggles and his team at Children’s Hospital.

My son had a 30% chance to live do to CDH . He was born in 2005, with the same condition and he had his repair when he was 3 days old. What scary situation!!

My daughter was born with the same birth defect almost 17 years ago. She spent 21 or more days at Univ. of MD and her doctors left her intestines wrapped in guaze on the outside of her stomach and each day they would come and push a little in as her belly made room. In the past 17 years we have found out her anatomy isn’t quite like the average person, she had to have her gallbladder removed and that surgery took 7 hours due to the scar tissue. Her stomach is opposite of the way it should be and her liver is a bit turned under its self. It has been a learning experience but all in all she is healthy and does everything a teenager enjoys doing despite some recurring issues. She is also looking into getting her scar cleaned up a bit and getting a belly button since she doesn’t have one. I was struck by this story for obvious reasons but my husband is also in the military, National Gaurd and is currently in Iraq.

My son was also born with this condition in December of 1991 in Daytona Beach. At 8 days of age he was transferred to a children’s hospital in Jacksonville. He went through surgery at 10 days of age. Thankfully, he had a couple of great Dr’s in Daytona that realized there was something seriously wrong and they arranged for the transfer. Depsite all that happened with him in those first couple of weeks, he is now a normal, healthy 16 year old. He has played soccer and was a speed skater for a couple of years. He was also diagnosed with Group B Strep at birth. I would be interested in knowing if any of the other cases here have a connection to Group B.

So happy to hear that Zachary has come home. Our family is close to a family who experienced this back in 1978. Medicine has come a long way since then.. Thank goodness. God bless you all for sharing your story.

You are in our prayers. I too was born with a congenital diaphragmatic hernia. I am now 31 years old and had not known that I had this until two years ago when I had to have an emergency gall bladder surgery. During the surgery I had difficulties breathing and when they opened my belly up they found that much of my colon was in my chest cavity. Literally scared the surgeon because he had never seen anything like it. I was referred to a doctor in Cape Girardeau Missouri whom referred me to another doctor in St. Louis Barnes Jewish Hospital. The surgeon at Barnes-Jewish found that I had been born with much of my colon in my chest cavity between my heart and right lung. My right lung is much smaller than my left due to not being able to develop fully due to no room. The surgeon opened the diaphragm enough to push the colon back to where it needed to be and then patched the hole with a mesh. I can say that I am doing better today. I have not had any stomach aches like I had growing up. Although I can say that I do have some digestive issues as well as some bowel issues. I hurt alot whenever the weather changes from the scar from the surgery. But other than that I am doing well.

While stationed at Mountain Home AFB in Idaho I gave birth to our third child Joshua who was also born with CDH. Immediately it was recognized and the nurses and pediatrician at the tiny base hospital bagged him till a plane could arrive to take him to Salt Lake City Primary Children’s Hospital. He had a slim chance but pulled through the surgery and did great. There is a website to offer information and support it is http://www.cdhsupport.org/

My nephew was born with CDH in Sept of 01. He was diagnosed when my sister was six month pregnant. They bagged him right away and whisked off to Children’s Hospital in Columbus. This strong little boy not only was on the ecmo machine once, but twice, (first child in Columbus to have this done twice). In June of 02 his diaphragm opened again and the family was called into to say their final good byes if he didn’t come out of his 4th different surgery. Well he did make it out of that surgery and he was on a feeding tube for his 1st year and on oxygen until he was 2. Now at age 6 he is going to school all day and playing soccer as well. Thank goodness for all the research that has been done on CDH and to the very dedicated and DRs, nurses, and staff at Children’s. Just want to let this family know that there is hope and God works miracles every day.

God bless all of you. Our grandson was sick for some time, numerous major surgeries (liver transplants). It is tough and hurts lik hell, but the kids are worth it. Our prayers are with you.
Jerry

Dotty, this is a great article about your family!!!! What a wonderful way to spread Congenital Diaphragmatic Hernia Awareness!!!!

For all of you CDH families reading this….

CHERUBS is a non-profit 501(c)III organization that was created to help families of children born with Congenital Diaphragmatic Hernia (CDH). CDH is a severe birth defect that affects 1 in every 2500 babies – over 1500 babies a year in the United States alone. CDH occurs when the baby’s diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and prevent lung growth. Correction requires drastic surgery and long hospital stays for these babies. CDH is fatal in 50% of cases. The cause is not yet known. CHERUBS supports families and medical care professionals by offering information, research, support and raising awareness. There are over 2300 families in CHERUBS - working together searching for a cause while supporting each other through the trials and tribulations of dealing with CDH.

http://www.cdhsupport.org

My heart goes out to the Davis family. Our son Bryston was also born with CDH 3 years ago. He was given a 10% chance of survival. All his lower organs had traveled to his chest preventing his lungs from growing and smashing his heart. Along with CDH he was born with hemi-vertebra, fused ribs, and a horse shoe kidney. He was isolated for 2 years and has had multiple surgeries and illness. He has overcome many hurdles and continues to do so, with a smile. He is our hero. I wish Zach and his family all the best and hope that Zach’s health continues to improve.

I recently had surgery for the same thing and I didn’t know I had a problem until I went to the chiropractor and they did xrays on my back ad saw my stomache was pushed through my diaphram. I have always had trouble with eating and breathing and now I know why. I am 64 years old.

I enjoyed reading the story about your son Zachary. Our son Jack, who is now 7 was also born with diaphragmatic hernia. He spent 3 weeks in Boston Children’s Hospital under the care of Dr. Jay Wilson. Looking at Jack, you would never know that he was ill at birth, except for his fading scar on his stomach from his surgery when he was two days old.
Shame on all the doctors that tell parents to terminate the baby, once diagnosed with diphragmatic hernia, ours did also. Advanced technology,research and doctors such as Dr. Wilson who specializes in this defect, save hundreds of CDH babies a year.

Congratulations again on your son

My friend’s son was also born with CDH. Another good website for parents of such children is http://www.realhopeforcdh.com

What a blessing to live in a time when these problems can be diagnosed and, usually, successfully treated!

I lost two babies, one in 1977 and the other in 1978 with the same issues.

Again I have lost 2 children to this diease. And this was 31 years ago. Never smoked, drank, drugs. Nothing.

Our daughter, now 9 years old, was born with CDH and was in the hospital at UCLA medical center for 87 days, was on ECMO for 9 of those days, had a “heart attack” that stopped her heart for three of those days on ECMO, and received numerous blood transfusions. She had no left lung and only one-third of her right lung. After 9 different surgeries, she came home on oxygen and we fed her through a feeding tube for one year.

I completely know what this family is going through! We, too, had to post a sign on our door that said, “Thanks for visiting, but leave if you are sick!!” This worked! We also kept our 3 year old home from preschool for the rest of the year.

Our daughter was given the “RSV” shot monthly after she came home, and did not get any respiratory diseases for the first year of her life. She had some setbacks along the way, but is now a healthy, happy, bright, fourth-grader who, aside from her scars, has no lingering effects from her life-threatening disease. In fact, she is running the mile run with her PE class at school today!

The doctors originally gave her a 30% chance at survival– and look at her now!

Our prayers are with your family as you all heal from this disease…

45 years ago at a small Indiana hospital, our first born had the same diagnosis - a diaphramatic hernia. During his first three days he had difficulty breathing, made worse when he was nursing, and we were told he probably would not survive. There was only a 5% chance he would survive. ..with or without emergency surgery. Just 3 days after he was born, we opted for surgery and began a prayer chain.

Fortunately, there was a new surgeon on staff from Children’s Hospital in Detroit, who had brought with him his infant-pediatric surgical instruments. Once our son’s chest was opened, a large hole in the diaphram (left side) was discovered with intestines etc. up in his chest pressing against his lungs. The surgeons went about putting our sons organs back in their proper pace, closed the hole, and told us our son would be fine.

Our prayers were answered and when he was 10 days old, we brought our son home. No further surgery or treatment was needed. As he was growing up and today, the only reminder our son has is the scar. A reminder of the day two doctor’s were wlling and able to do what was needed to save his life. Today he himself is a proud parent.

For us and our son, he was born at the right hospial at the right time - thanks to he pediatrician, surgeon, anesthesiologist, and nurses who were there to care for him.

We share this story, to let other parents who have an infant born with a diaphramatic hernia know it can and is easily corrected.

Joan

You are in my thoughts and prayers. I am the mother of a 31 year old who was born with CDH. He is healthy today, thank God, and never had any problems after his initial surgery. You will be in my prayers from now on. Please keep me posted on your baby’s development. Our baby was flown from our small hospital to Santa Rosa Children’s hospital in San Antonio, TX within hours of birth. He spent 22 days there before we were able to bring him home. I call him our Christmas Miracle. Technology has come a long way since. It seems like so long ago.

My 31 year old is healthy today after a rough 22 days with CDH at Santa Rosa Childrens Hospital in San Antonio TX. Technology has come a long way since. He is my Christmas Miracle and I thank God for a watchful doctor even though my baby was born in very small hospital. The Army allowed one of their Air Ambulances to come to our town and pick him up and within hours of his birth he was having surgery to correct his hernia. All the praise goes to God as I know he will see your baby thru this also.

Hang in there, Zack. My story: back some 69 years and eight months ago, (telling my age, uh) I was diagnosed with diaphragatic hernia by a young doctor just out of University of Tn, named Dr. Fuller. I was aproximately 3 to 4 months old at time (1938). I was thought to have hooping cough. My mother and dad never gave up, thanks to God,even thought they had to carry me approximately 68 miles in a wagon and train to a lumber mill town, named Electric Mills, Ms which was outside of Meridian, Ms. A young doctor had heard of something while in UT medical school that the ole doctors had not heard of, and that was injecting a dye into the patient. My parents agreed to try this procedure. Dr. McCarty, the older of the two doctors, with Dr. Fuller assisting did the surgery on me. My parents carried home by train and those mules pulling the wagon. I am 70 years young, have one daughter, six grandchildren (which words can’t describe how much joy they bring, especially when odds were that I wouldn’t be here to enjoy them.) I have three older brothers and a sister and they are doing well. Oh, Dr. McCarty went from there to become head Florida’s medical board. I don’t know what happn to the yonger doctor. Keep a positive, positive attitude and hang it there, things can and will be all right.

My wife Kristi already posted concerning this article and I would just like to send my most heartfelt words of encouragement to Zachary and his parents. It seems like yesterday that Jack was born with CDH and everyday I thank GOD for his strength, tenacidy, and perseverence in overcoming this ailment. I also thank GOD for Dr.’s Jay Wilson, Russell Jennings, and the countless other medical professionals at Boston Children’s Hospital for working diligently to save these precious children. Seven years have passed since Jack was born and today he is as healthy and energetic as any child can be. Good luck Zachary and stay tough as you and your family will remain in our thoughts and prayers.

Wonderful Article again Dotty - Mary posted this - we are all Zach’s biggest fans. Loved the wristands you and Harold both wore for the picture!

This is not a rare birth defect - every day almost 5 families in the United States alone receive the news that their unborn or newly born child has CDH. I loved the stories here of those that are in their teens and adults who have survived and thrived.

Elizabeth
Congenital Diaphragmatic Hernia Awareness TM Day - March 31 - proclaimed by 31 States for 2008 - we want all 50 for 2009

Way to go Zachy Poo! Out of the hospital praise GOD!!! Dottie, you’re an awesome mother. love you guys!

Shanell and baby Ayda Rose( Congenital Diaphragmatic Hernia Survivor)

Dotty,

I am so happy to see this article make it to FOX news to help spread awareness of CDH. You already know how much of a miracle I think Zach and all CDH babies are. I am so glad medical technology is improving to help save the lives of CDH babies and for all the little ones parents whose babies didn’t survive, including my sweet Kaleigh, we have some hope that one day no parent or child will have to suffer from this devastating birth defect. As always Zach is in my prayers, and keep his sweet little smiling pictures coming. I love them!!!!

Twenty-five years ago on March 24, my son was born with a right-sided CDH (they are most often on the left). He had surgery within a couple of hours after being trundled across the street to the university teaching hospital, where I was a surgical resident. I knew he had only a 50% chance of surviving. He was flown to Ann Arbor, Michigan within 24 hours in case he should need the heart-lung machine, which he didn’t, fortunately. He was two weeks overdue, so he was over 8#, which I am sure had a lot to do with his survival. He came home after two weeks, but I had to put a feeding tube down his throat every four hours, because he couldn’t eat while breathing 80 times a minute. On Mothers’ Day, he was finally able to eat on his own. What a great Mothers’ Day gift! Because he was a doctor’s son, the hospital photographer came in and took photos during the surgery. One showed the tiny nubbin of right lung in a large otherwise empty chest space (seen through the hole in his diaphragm). His chest x-ray two weeks later was normal. Today he’s healthy, happy and getting married soon. Best wishes to the family for their son’s continued growth and improving health.

Zachary,
We are aleady knew you were amazing, but now you are a Super-Star! Look at how you are spreading awareness for this birth defect. I am amazed at the stories of so many folks here! Many blessings to all of you!
I have been praying for Zach since before he was born, he has come so far!
My son was born in 1987 with CDH & was on ECMO, he was given a 5% chance to live, he spent 2 months at Cincinnati Children’s. He did have RSV & Scoliosis but is now in his 2nd year of college and doing great. He received an academic & vocal scholarship for college…the baby with bad lungs and bad diaphragm can sing like you wouldn’t believe!
Thanks to all of his doctors (Drs. Ryckman, Sheldon and so many others), nurses and staff, you saved my boys life and I am forever thankful!
Congratulations Harold & Dotty, job well done! Welcome home Zach!
Many prayers still coming your way!

Jeanie & Ryan
Cincinnati, OH

Hey Harold & Dotty,

I am so glad Zach is home and he is doing so good!!! Wish I could be there to see him myself!!! You guys have been doing so great through all this and I have been thinking of you guys a lot!!!
You are such great parents!!
Big hugs to the kids =)!!!

Will & Heike

Hello my grandson was born with that condition, he now is a vibrant 6 year old, that can’t be kept down. He is energetic and Jersey Shore medical Center did a wonderful job.

May The Peace Of The Lord Be With The Davis Family Always.
I & The Members Of Trnity Lutheran Church in Battle Creek, Michigan Will keep them in our prayers.

In God’s Mighty Blessings to SGT D. & Dottie,
Zach has the love of his brothers and family to keep him safe and healthy. Prayers from around the world are happening right now for the CDH research and all the babies & families that have to hear the news from their Doctors. Thank God for Dr., nurses and technology.
Prayers for all the Military Families that have to deal with Deployments, Active military missions and taking care of their family’s. You both are Heroes! Zach was blessed to be born to you guys.
HooAH!

Hi Dotty, this is Cindy R from Germany… Like I said before, you and your hubby are so strong and thats why your baby boy is such a fighter ! You and Harold are the most honest giving people I know, and like all this people that have posted comments on your special story said, stay strong like you are… this too shall pass!!! Keep your faith and this too shall pass!!!! You are always in my thoughts and prayers, god bless you and your beautiful, wonderful, and blessed family… Remember we are army wives, we can do anything!!! Love you girl…

Prayers are with Zach and the Davis family. Great to hear that Zach is back home with his family!

What a wonderful article. You’re such a fighter Zach! I’m so proud of how great you’re doing. Your mom was a great source of support to me when my son was born with CDH. Maybe one day you guys will meet!
Love
Vicki Jensen
mom to Jack, 8/20/07, LCDH & ECMO (almost 8 months old now and saying MaMa!)

SGT D,
My prayers for your family and continued blessings. After all we went through in Iraq in 05-06, then to come home and have this, I am glad its going well. I hope that everything goes the way your family deserves and everyone lives a wonderful and full life. With you as Zach’s father I see nothing but the best.

Charlie Rock!!!! (well not anymore, but you get the idea!!!)

I do not know anyone who has suffered from this disease, but than you for bringing awarness to the disease!!

My family and I send our prayers. God Bless your family. You and your family are very brave. I am glad you that you have never given up. Baby Zach is a blessing and I am glad that you and your family are standing strong beside him. Take care, God Bless.

Charlie Rock!!!

Zach I am still praying for you!! Keep fighting! You can do it.
You mommy wants you out of the hospital and back home again.
SMILE,
Bethany
Mother to Brody born Dec. 06 with CDH

On October 12, 1980 my son was born in Beaumont Texas with a diaphramatic hernia. Our pediatrition told us nothing could be done for him, left the hospital and went home. A nurse on duty went ahead and put him on a ventilator and called in the neonatologist who decided he might have a chance. He was flown by helicopter to Herman Hospital in Houston Texas and Dr. Benji Brooks did the corrective surgery. She had to put all of his intestines in backwards, because that is the only way they would fit. He only had 1/2 of one lung, but like the baby in this story there was room for development. The first several years were hard, his immune system was compromised, he had many respitory and other health problems–BUT IT WAS WORTH IT. Today he is a college graduate, married, and a police officer in the Dallas area. He and his wife gave birth to a beautiful baby girl a little over 3 years ago and my son, his wife and I went to Vietnam last summer and they adopted another beautiful baby girl.
Hang in there. Sometimes it is so hard. I once had a doctor in the emergency room at John Sealy Hospital tell me I was waisting all of my emotional energies and financial resourses on a baby who would never have any quality of life. I sure wish I could remember his name. I would love to introduce him to the wonderful young man my son has grown up to be.