Owen’s Story

Following is the story of our beautiful baby boy Owen. He was born with a Congenital Diaphragmatic Hernia. This is a CDH success story. This story may be long, but I wanted to include so many of the details that are important for other people experiencing this type of defect to help answer questions and give them hope.

A while ago a poem was posted on one of the list serves that I belong to, it’s called “Thoughts on Becoming a Mother”. The following part really touched me and how my perspective has changed since our journey with Owen:

“I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body. I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.”

Thanks for reading our story!

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PREGNANCY
Danny and I found out that I was pregnant with our little Peanut on July 17, 2006. I was having some problems and didn’t know that I was expecting until a blood test confirmed it. Our baby was a rascal from the start! Over the next couple of weeks we had several doctor appointments and ultrasounds to confirm that the baby was ok. In the ultrasound the technician and doctor both said, “oh, good there is a little peanut in there.” Grace was with us and the name caught her attention and just stuck. In the end of August I had a lot of bleeding and we thought that we were losing our baby, but again, he was just being a rascal! In my pregnancy with Grace I had gestational diabetes, because of this I was tested early in my pregnancy and was diagnosed with it again.

My pregnancy continued and was rather uneventful for the next couple of months. Danny and I started going through names that I had found and liked. We started with a list of boy’s names: Elijah, Isaac, Jack, Luke, Max, Owen, Samuel, and Zach. Danny immediately chose Owen and said that was the name. I suggested looking at girl’s names and he said we didn’t need to it would be Owen James (Danny’s middle name is James and Grace is named after me). THEN in early November we found out that we actually were having a boy. We didn’t share the name with anyone except my OB.

DIAGNOSIS
Our story took an “exciting” turn in January. I went in for a 32-week ultrasound to measure the baby to make sure that he wasn’t growing too big due to my gestational diabetes. His measurements were fairly normal in the ultrasound; I on the other hand was measuring big. At 32 weeks my belly was measuring at 40 weeks or full-term, two months big! This was due to polyhydramnios, or excess amniotic fluid. My OB checked with a high-risk OB in the area and he suggested that I come back in 10 days for another ultrasound. By the grace of God we had this additional ultrasound. It was in this ultrasound that Owen was diagnosed with a Congenital Diaphragmatic Hernia (CDH). Our local hospital is not equipped to care for this type of birth defect. If it had not been detected prior to birth and I had delivered at our local hospital, Owen would have been in respiratory distress and been either life-flighted or taken by ambulance to Portland while I remained in our hospital.

I have known my OB since I was about 3 because she went to the church that I grew up in and she and her sister babysat my sister and me. I cannot imagine how hard it was for her to tell Danny and me this news. I remember knowing that something wasn’t right. The ultrasound tech was usually very chatty with us. I asked her some questions and she wouldn’t answer. My OB sent us right away to a specialist and they confirmed the diagnosis and said they wanted us to go to Portland to deliver. This may sound weird but I was more upset about having to deliver away from home and away from my doctor. I don’t think I took the diagnosis that seriously and I didn’t know fully what the possibilities were.

CONSULTATION IN PORTLAND
I did a bit of research but not much and we had consultations with doctors in Portland. Our consultation in Portland was a bit of a twilight zone experience for both me and Danny. I had great conversations with the nurses on the phone prior to our visit and one of the doctors even made a point to see us during our visit so that we wouldn’t have to make a return trip to see him a different day. I was quite shocked when we ended up with an ultrasound tech who implied that the hernia had been missed by our “hometown” docs. We also had a doctor who found that Owen had an undescended testicle. According to this doctor, that meant he had “multiple abnormalities” which pointed to a chromosomal defect and did an immediate amniocentesis to determine how “seriously” they would treat our baby. Danny and I were in absolute shock at this point. BUT, when we went to see the pediatric surgeon, he said that undescended testicles are very common, period, plus with a hernia baby, you tend to see multiple organs that just get “sucked-up” and he was sure it wouldn’t be a problem. We headed back to Eugene not quite sure whether to be relieved or scared. In the couple of weeks before we were to leave for Portland we got phone calls from the genetic counselor letting us know that all of the results for the amniocentesis were normal and that they had found no chromosomal defects in Owen.

WAITING
Time went so fast and so slow at the same time. I had those few weeks to mourn the birth that I had hoped for. Owen’s diagnosis was a right-sided Congenital Diaphragmatic Hernia (CDH). This type of hernia allows bowel, liver and other tissue from the abdominal cavity to move into the chest cavity and it can prevent proper development of the heart and lungs. To have the hernia on the right side is more rare and can be a “good thing” as it was in our case. Because of the late diagnosis of his hernia (most are diagnosed at 20 weeks) it did not seem as severe as it could have been. He had bowel in his chest cavity and part of his liver, which also acted as a plug in the hole. His heart wasn’t impacted nearly as much as it would have been if the hernia were on the left side. We would not know what his lungs looked like until he was born and his repair surgery.

In the time that we were waiting for Owen to arrive, I compiled a notebook of scriptures and quotes to encourage me to keep my eyes on God and to give Him the burdens and the worry. This helped me so much in easing anxiety. I took it with us and had it with me everyday in the hospital to read while I was pumping milk for Owen. We also gathered a list of email addresses so that we could send updates to family and friends and we were amazed to find that we had nearly 100 people that we were updating on Owen’s condition and who were praying for us and our little guy. Many people forwarded our updates on to their family and friends. We firmly believe that these prayers and the grace of God are what got us through this experience.

We went up to Portland on Monday, March 5 and stayed in the Ronald McDonald House the night before my c-section. It was all so surreal. My parents came up with my sister who was visiting from North Carolina and Danny’s mom and step-dad came up and brought Grace and got there just before the c-section. There was a chaplain that came and prayed with Danny and me and for Owen and then I went into operating room.

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OWEN’S ARRIVAL
I didn’t think I would get to see Owen after he was born but the doctor made sure that I did. He didn’t cry, he just gurgled and he was pretty blue and then they just took him away to the room next-door. Danny was able to go with him and go back and forth between the two of us. The team of doctors and nurses immediately intubated Owen and sucked out any fluid in his stomach and put a line in his umbilical cord.

The anesthesiologist took special care to be by my side whenever Danny went with Owen. He talked to me, reassured me and just helped me to stay calm without having to knock me out. I am so grateful for care.

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After the c-section I went to recovery and on the way from recovery to my room they wheeled me (in my bed) into the NICU to see Owen. I had no memory of it until I saw the pictures later. I was able to go down later and see him but his bed was so high up and I had to stand on a stool to see him and it hurt so much because of the c-section. Despite the tubes he looked so strong and healthy but he still had bits of goo and blood on him because they didn’t want to touch him too much and stimulate him too much by cleaning him. The next couple of days were a blur.

OWEN’S SURGERY
I vividly remember the day of his surgery, which was Friday, March 9. I had been doing so well and holding it together and I went down to see him before the surgery and my sister was with Danny and me. Danny had changed Owen’s diapers and taken his temperature before and he asked if I wanted to change it this time and I got up to do it and I just lost it. I couldn’t stop crying and I felt like I was going to be sick. I just worried, what if I never get to change it again, what if this is it? There was a chaplain there named Jill that we visited with quite a bit and she brought my family in to pray over Owen before his surgery. She had me place my hand on his forehead and then Danny’s hand on mine, and my sister’s on his, my mom’s, the nurses, his anesthesiologist and she gave the most beautiful blessing that I can’t remember a word of.

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We waited in my hospital room and there was someone in the operating room that would call and tell us how things were going in the surgery and then when we thought we couldn’t wait anymore the doctor walked in and he had the pictures from the surgery and told us how it all went and when we could go see Owen. Owen did amazing and they were able to repair his hernia (a 5 centimeter hole) laproscipcally. He only had four small incisions, 3 that were 3 mm and one that was 5 mm. We found that Owen’s left lung had developed normally and that his right lung was 2/3 normal size.

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OWEN’S POST-OP RECOVERY
On Sunday, March 11, less than 2 days, later he was off of the ventilator. That same day, they slowly started giving him food for the first time through a feeding tube down his throat. After Owen was removed from the ventilator he was put on a machine called c-pap, which provides positive airway pressure to help him breathe. Because they didn’t want the air to come out his mouth they put a band of material around his head to hold his chin shut, he had tubes in his nose and a tight cap on his head that the tubes were attached to. The first day or so he bubbled and foamed at the mouth and his face was swollen and his eyes were usually swollen shut.

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It absolutely broke my heart to see him like this. Even though I knew he was doing better he looked worse than he had on the ventilator. Once a shift (every 12 hours) the respiratory therapist would remove all of the paraphernalia and check his head and we would get to see our baby and look into his eyes. This lasted about 60 seconds and then they would put everything back on. The better that he was doing the longer he was able to be without it and we could snap a picture or two so we could remember his face.

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Once his chest tube was removed I was finally able to hold him. On Tuesday, March 13, one week after Owen was born I was finally able to hold him for the first time. I had been waiting so long for it, it felt so good, but then I got scared. He was still so full of tubes and I couldn’t see his face or his eyes because of that darn c-pap so I only held him for a few minutes. As time went on it became much easier for me to hold him. Danny got to hold him two days later and they both fell asleep in the recliner.

I had packed a bunch of hats to bring to the NICU (one for everyday of the week) thinking that if nothing else he would be able to wear those, but with c-pap he couldn’t wear a hat. A family who had babies born on St. Patrick’s Day had sent a box of fleece hats with shamrocks for all the babies in the NICU. I was determined that Owen would have the luck of the Irish and be able to wear his St. Patty’s Day hat on St. Patty’s Day. And on March 17, his c-pap machine was removed.

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LEARNING TO EAT
We had been warned that the feeding would be the longest most frustrating part of this ordeal. In the beginning you survive on adrenalin. Each day is literally a fight for life. Because he was intubated for almost a week and then tube fed for another week, Owen basically forgot how to eat on his own. He had to “remember” how to suck, swallow and breathe all together. It seems easy, but it’s not! It takes a lot of coordination and effort. For a baby that has been through major surgery and that has been on different meds like morphine it is a struggle, especially when there is also a lung deficiency. The whole process is exhausting. We started off slow. A couple of times a day I would try to feed him for about 15 minutes at a time. When he got too tired we would stop. Once a couple of days had passed we got more serious and as one of the nurses called it we were at “baby boot-camp”. I tried both bottle and breast-feeding. It became obvious that the bottle was our ticket home so we decided to focus on me pumping milk and feeding Owen by the bottle. A speech therapist was called in to evaluate his sucking and mouth structure. She found that his tongue was riding up in back and that the milk was not going down his throat, rather just pouring back out his mouth because his tongue was blocking his throat. She suggested a different nipple for his bottle and we had immediate success but he was still only taking a small portion of his bottle and then needed to be tube-fed the rest.

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On Tuesday, March 27 we went home for the day. It was my first trip home and I was so heartbroken to go home without Owen but we just needed a break. It felt like we would have possibly another two weeks in Portland and we were just so homesick. It had been such a struggle for me to balance Grace and Owen. I wanted to be with both my babies, you just couldn’t expect a 2-3 year old to be patient and quiet in a NICU! If she was at the house I felt like I should be with her, but when I was with her, I felt like I should be at the hospital with Owen. Grace ended up spending about half of the month with us, and about half of the time with grandparents.

HEADED HOME!
We went back to Portland and after another couple of days something just clicked and Owen finished every bottle one day. His doctor told us that if he kept it up for another 24 hours we would get to go home on Saturday, March 31.

We were ecstatic to go home with Owen. My parents brought Grace up and helped us get our stuff out of the Ronald McDonal House. We wanted Grace to ride home with us and “help us” bring her brother home. It was such a stressful ride, but we made it! The first few days at home were a little rocky. Owen didn’t eat nearly as well as he was adjusting to life on the outside. But when we went in for his first weight check with his pediatrician we found that he was doing just fine.

Owen didn’t really suffer from reflux in the same way as many CDH babies do. However, he did have trouble keeping down his bottle right after he had eaten if he was moved around very much or laid down flat. We held him upright when he ate and then we had a “30-minute rule” as well as a “butt can’t go over the head” rule, after he ate, he remained upright for 30 minutes. Even if he filled his diaper, we wouldn’t change it until at least 30 minutes had passed. The times that we didn’t follow the rule, he would lose what he had eaten.

UPDATES
We have had two check-ups with Owen’s pediatric surgeon in Portland and so far all is well. We found that his right lung is still smaller than normal and his left lung has actually grown larger than normal to compensate. Children’s lungs grow until they are about 8 years old so there is hope that his right lung will still function at a normal level. Since his left lung is larger it has slightly pushed his heart to the right side. Owen has a chest wall defect called Pectus Excavatum, which is a pitting in the center of his chest. His is minor and shouldn’t be an issue. Owen also has a slight gross motor skill delay that could be due to genetics (his sister also had one) or due to the fact that he was in the NICU for a month. We aren’t too worried about it.

UPDATE- 2/2009
Owen is just about to turn 2 years old and is doing amazingly well. He has been released from his surgeon’s care (since 08/2008) and is just a normal toddler. The only issue that we have that is remotely related to CDH is that whenever Owen catches a cold it tends to head straight for his lungs. We preventitively use his inhalers as soon as he is catching a cold to see if we can keep his wheezing to a minimum.

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If your baby has been diagnosed with CDH and you would like to talk to me, please leave a comment and I will get right back to you. I would love to tell more of our experience and how Owen is doing now and answer any questions that you might have.

83 responses to “Owen’s Story”

  1. Lara says :

    Unbelievable story…even though I knew of this as you two were going through it, it is still so fresh in my mind. God is wonderful! We love and miss you guys so much. Give Grace and Owen hugs for us. =)

  2. Sara Ekelund Higgins says :

    Darcy, thank you for sharing this story. (I’m am a friend of Alyce and Terry Reese…she shared your story with me because I had an older brother born with CDH). It is so wonderful to see Owen smiling and so vibrant! I am thankful for the advances in medicine we have now to help these babies survive and live happy lives. Your children are beautiful and you are a brave family. God bless all of you with peace, health, and happiness.

    Sara Ekelund Higgins

  3. Amber Myers says :

    It’s five in the morning and I have been up for hours with little sleep researching on the internet. Yesterday I was so exciteded to go in for my twenty week ultra sound. I couldn’t wait to find out if it was a boy or girl. My husband and I were delighted to find out that we were having a boy. I was on cloud nine. That is until my doctor called me at 7:30 at night. It’s never a good thing when the doctor calls you, he informed us that they found a birth defect called congenital diaphragmatic hernia. I am devasted. After reading your story I feel like there is hope for my baby. Thankyou for sharing your story.

  4. ittybittyblog says :

    Amber, thank you for posting on my page. I am so sorry that you have just received this diagnosis. I sent you an email in response to this post. If you need any support please let me know, if there is anything I can do, I will. I will certainly be praying for you and your baby.

  5. Amanda Moffatt says :

    Darci and family,
    Mom has been keeping me informed about Owen and his events. It is wonderful to see how well he has recovered. I find it nice to see that you shared your story with everyone and keeping us updated. Your family is beautiful and full of life and there are no obsticles that life throws to you that will keep you guys from not staying happy. What you went thtough must not have been easy. Our little one had to have kidney surgery the day after Christmas when he was three months. I didn’t feel uneasy until the moment they took him off to surgery. Please keep us updated and give everyone hugs, some day we will have to get together and let the kids meet. Montana loves meeting new family members and is excited that she has cousins in another state!

    Take care,
    Amanda

  6. Dawn Torrence says :

    What a cutie! I love his smile. What an inspiring story as well! We’d love to have you become a part of CHERUBS.

    CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Supprt

  7. Fer says :

    Darcy, thanks so much for sharing this with me. Your story is kind of similar than mine in a way, though Juan Pablo was diagnosed with CDH when he was already born.

    Owen is such a fighter, he is a cutie. You are blessed 🙂

  8. ClearlyRandom says :

    By one of those strange coincidences in life I found your site this morning as well. I had been looking at my settings on wordpress and found one that linked to similar tags. Your site showed up in the list. Thank you for putting your story out there. There are more than enough sad endings to CDH stories, its nice to see some that are happy.

  9. SONIA says :

    Hi I am living in Greece and I too had a son 24th Aug 2006 who was diagnosed at 20 weeks with a right-sided CDH.He was operated on the day he was born and after that his progress has been great.His right lung is smaller than his left one,his heart has been pushed to the left and he also has a pitting in the center of his chest ,which never concerned the doctors.Owens story sounds exactly like mine and I’m so glad he is doing great.
    I still worry though because if he catches a cold it always terns to brogiolitis but we give him medicine and it usually clears up in a week.
    The doctors reasure me that he is fine and tha his lung will grow slowly but probably will never be normal but this should not give him any problems.
    I am so glad that ther are other people that are out there that I can share my concerns with and that not all stories have to have a sad end!!
    Give Owen a big hug he is also another little fighter!!!!!

  10. Amber Myers says :

    Hey Darcy I have been meaning to email you since our meeting back in November. I want to thank you and your familly for opening your arms to my husband and I. Meeting Owen in person has given me so much hope for our little Owain. I only have a few more weeks until our little guy arrives. I am scheduled to have him Jan. 29. I am terrified I wish I could put it off for a few more months! Labor doesn’t scare me but knowing what our little guy is going to have to go through for the first few months of his life scares me. I just hope that we to will have a happy ending and will be able to get our boy’s together in the near fucture. I will keep you posted. Bye Bye

  11. ittybittyblog says :

    Hi Amber!
    I just tried to respond to your post by email but I keep getting a delivery failure notice…I’ll try to resend the email tomorrow. Let me know if there is a different address I should use.
    Thanks for posting, I have been thinking about you and little Owain.
    I’ll be praying for you and Eric and Owain in these next couple of weeks. I totally understand being terrified, I will pray that Owain is strong and a fighter!
    We will be at Legacy on Jan 31 for Owen’s check-up, I’ll be stopping by the NICU to say “HI” so I’ll see if you are there.

  12. Joe says :

    Hey Darcy,

    Thanks for stopping by my blog and commenting. And thanks for allowing me – and so many others – to read your family’s story. Amazing. May God go with you.

    peace — Joe

  13. jennifer fox says :

    Dear Darcy,
    First, I am impressed with your website. After
    reading it I could not stop crying.
    I am 34 weeks pregnant and my unborn daughter was just diagnosed two days ago with CDH.
    Your story is so inspirational. Thank you.
    We were in complete shock and are now starting
    to gather all the facts. I am also from Oregon but now live in Phoenix. I would love to talk to you if possible…I know you are a busy mom. Could you e-mail me? Thank you, Darcy.
    Jennifer

  14. ittybittyblog says :

    Dear Jennifer,
    Thank you so much for posting a comment. I am so sorry that you are facing this diagnosis. I sent you an email with my phone number. If you didn’t get it please let me know. I would be happy to talk with you about our experience.
    darcy

  15. Kristen Bier says :

    Dear Darcy,
    What a wonderful outcome! How great it is that you have given so many so much hope.
    I wish you and your family continued good health and happiness!

    Kristen

  16. Michael says :

    I think your baby is a special precious baby
    I would be terrified if my baby need surgery
    and in my life I want a healthy baby but whatever God bring you your baby is going to be very special forever

    ps I love to see more photos of her grown up
    and see her images before and after

  17. Ellen says :

    Hello,
    I stumbled upon your blog while doing some research for a friend who just had a baby with amniotic bands(?) syndrome. Baby Tyler is beautiful in every way; created in God’s image. His little hands and feet have some constriction and webbing which was not diagnosed in the womb. I found your story to be heartwarming and courageous. Thanks for sharing the Goodness of God and His grace. I pray that your family will continue to remain strong as you face life’s many trials. Blessings to all of you, Ellen

  18. ingrid houchin says :

    Hi Darcy,
    Thank you for posting your story on Benotafraid. We are 14 weeks pregnant and our baby girl has just been diagnosed with cdh. It seems that her heart is displaced to the right and both her stomach and possibly her liver are adjacent. Our hospital in London offers a procedure whereby they insert a balloon down the fetus’ throat to push the stomach down and allow the lungs to develop. It seems that although this procedure is still experimental, it does improve the survival chances of the baby. It’s such a heartbreaking piece of news and we are at a loss about what to do. The problem that we have is that there are no guarantees that even with this treatment and the subsequent surgery the baby will have to undergo, our little girl will have a normal life. Just reading up on reflux and all the other health problems that accompany cdh makes us wonder whether we should subject our baby to so much pain.
    Seeing that you have already gone through this with Owen, we would appreciate your thoughts.
    Thank you in advance.
    Kind regards, Ingrid Houchin, London/UK

  19. ittybittyblog says :

    Hi Ingrid,
    I am so sorry that you are facing this diagnosis. I sent you an email last night. Please let me know if you don’t get it and I’ll try again.
    darcy

  20. Shelley says :

    Darcy,

    I wanted to thank you for commenting on my blog (a month and a half ago!) and say I’m sorry for not getting back to you sooner. I’m happy to say Jamie is doing very very well. In fact, we just had our first post op appointment with our surgeon, and she only wants to see him in a year, and says there are no medical restrictions on anything he does from now on. I was so relieved to hear that he is okay. They will continue to monitor him, and I will always be a little paranoid, but it was such a relief. I’ve still been afraid that there might be a set back, so I cried after his appointment, I was just so happy. Going back to Riley’s for his appointment, I just relived everything, and to get to take him in healthy, and take him home healthy was very special to me.

    Reading your Owen’s story made me very hopeful while Jamie was in the hospital. Now, reading it again, I’m hopeful that he will continue to do well, as Owen does. I was also relieved that your results from the geneticist was that it wasn’t chromosomal. I’m now pregnant, and am hoping we don’t have to go through this again, and if it’s sometimes not genetics, that makes me hopeful for this baby.

    Thank you for writing, and I would definitely like to keep in touch with you.

    ~Shelley

  21. Carey says :

    Hi Darcy, thank you so much for your comment on our blog. How did you come across it in the first place? Thank you for the link to your blog. I have found it very informative as we are facing this. I learned a lot about CHD by reading your blog and I found it very helpful. We head back to Stanford tomorrow and Wednesday for more tests and consultations and hope to find out more details about Caden’s heart. But we are hoping and praying for a positive outcome. We will update the blog when we get a chance. Carey

  22. Rachel says :

    Congrats on the success with owen. I was diagnosed with CDH about a month ago. After undergoing much testing we found a larger than normal right lung and tiny left, but it is still early as i am 23 weeks. The liver is down and there is no bowel strangulation his hole is left though. We live in St louis and will be using children’s hospital for the care. I am optomistic sometimes and saddend others. The thing is our son is also missing the majority of his left arm. I feel so bad for the little guy. I love him so much and want him to make it. the next 3.2 months are the worst. There is nothing i can do to help him that is the killer…and all we do is waiti and have faith. Any encouragement is helpful. I am sad frustrated and angry all at the same time with hope and …well you know.

    Thanks

    Rachel

    • ittybittyblog says :

      Rachel,
      I am so sorry that you have gotten this diagnosis. I sent you an email last night. Let me know if you don’t get it.
      darcy

    • Lindsay H says :

      rachel, i am so sorry to hear about your little guy. I too live in St.Louis and will be using childrens hospital for the care of my daughter, she also has CDH on the left side with her stomach, intestine, and a small part of her liver through the hole. they diagnosed her at our 20 week scan and i went to barnes at 23 weeks to see Dr. Rampersad( which i love) she has been great so far and so has all her staff at wash u. We may not be able to help our babies out much now but one thing we can do is pray for them and trust in God. He is bigger than all of our problems and can help us through anything. I will keep you in my prayers as well thats all we can do is pray and ask God to help our babies and to guide the doctors that will be working with our little ones

  23. Shawn says :

    Hi Darcy,

    Thanks so much for sharing your story and Owen’s success with this terrible condition. We have recently found out that one of the twins my wife is carrying has CDH. Never in our wildest imagination did we think we would be dealing with something like this. Reading about your little fighter and the success he has had gives us so much hope which is sometimes hard for us to find with CDH. We are so glad to have found your site and wanted to thank you for sharing.

    Shawn

  24. Shannin says :

    Hi Darcy,

    I came across your blog today when I was looking at other CDH stories and was happy to read your story. My husband, Jason, and I had a baby girl on August 12, 2008 that had a left side CDH. Her name is Zoe Henry. One of the reasons your story resonated with me is because she was also born and treated at Legacy Emanuel, with Dr. Bliss as her surgeon. We were in the NICU for almost 3 months and have now been home for three months. Zoe continues to get stronger each day and yet has some pulmonary hypertension issues to work through. SHe is now being treated at Seattle Childrens Hospital which is closer to where we live. The ECMO beds were all being occupied in Seattle so they sent us down to Portland. Zoe’s website is http://www.zoehenry.com if you want to know a bit of her story. Best wishes for continued health and I will continue to keep up to date. Legacy and the staff there are amazing people, we wouldn’t have Zow without them.

    Shannin Strom-Henry
    Bainbridge Island,WA

  25. Tanaya says :

    I just discovered your site and wanted to say how delighted I am that Owen is doing well. We just missed each other at Legacy since you left the end of March and I arrived April 11th. It is amazing how resilient children can be. Thank-you for sharing your story.

  26. Jana Lewallen says :

    Darcy, will you please e-mail me. I run the website CDH Rainbows (formerly A Rainbow of Hope) and would love to list Owen on our Survivor Page!

    Your children are beautiful and reading Owen’s story has really touched me. All of us with kids affected by CDH have such similar but different stories.

    Jana

  27. NICHOLE KENTON says :

    Dear Darcy,

    Thank you for Owen’s story. I needed to read a success story. I too recently found out that my baby has CHD. I just had my Fetal MRI yesterday and am waiting for the results. This is so very scary and it helps knowing that others have gone through it and survived!

    • ittybittyblog says :

      Dear Nichole
      Thank you for stopping by my blog and leaving a comment. I am so sorry that you are facing a CDH diagnosis. I am glad that Owen’s Story helped you feel some hope. I will keep you and your little one in my prayers.
      If you have any questions please don’t hesitate to ask.
      darcy

  28. Leah says :

    Thank you for sharing your story. It caught my eye because my 2.5 year old’s name is Owen. Owen got a brand new beautiful baby brother named Grant on 01/11/10. Grant was born with CDH. It was a complete shock to us at birth as my 20 week ultrasound anatomy scan showed no signs whatsoever of CDH. We’re hoping that’s a very good thing as possibly at 20 weeks the hernia was still too small for anything to pass thru or possibly the contents of his abdomen were bouncing back and forth at this point and on the day of my U/S they happen to be in place. We just won’t know for sure until he has the surgery which is tentatively scheduled on Tuesday 1/19. Obviously his father and I are petrified. We’ve been running on adrenaline, prayers and thoughts from our friends and family, and love for that child for the past 6 days. We want nothing else in the entire world than for him to be healthy and alive and a happy little boy just like big brother Owen.
    Your story does give me hope that someday soon we can hold him in our arms and bring him home where he belongs.

    If you can, please keep our family in your thoughts this week. Tuesday is going to be a tough one for all of us, but especially for Baby Grant.

    Thanks,
    Leah

  29. Whittney Tomczyk says :

    Hello. Thank you for sharing Owen’s amazing story. Someone shared this blog with me because my son’s name is also going to be Owen, and he has a right-sided CDH with the small bowel and part of the liver in the chest cavity. I am due in 10 weeks, and it is very helpful to read success stories.

    Any advice that you would be willing to share would be greatly appreciated, including how to keep from losing my mind.

    I am so glad that your son is doing well.

    Thank you again for sharing this story.

    Sincerely,

    Whittney Tomczyk

    • ittybittyblog says :

      Hi Whittney,
      Thank you so much for leaving a comment on Owen’s Story. I am so sorry that you are facing this diagnosis with your little Owen. I am going to send you an email right now.
      Thank you again for leaving a comment.
      darcy

  30. Jami Marzolf says :

    It has been almost 9 months since my son Riley was born with CDH, and seeing Owen’s story has left me sobbing and broken hearted. Thank you for sharing his story and your journey through CDH. I will definetly be coming back!

    Love,

    Jami Marzolf & Riley

  31. Monique says :

    Loved reading your story! I also have a CDH survivor born June 19th 2008 with left sided CDH. He was also born at Legacy Emanuel. We live in Forest Grove OR. Our little miracle is Chase Owen! We also have two other children (Tyler is 9 and Ellie is 5). What a journey we have been through as well. Our story is very similar. I was diagnosed at 28 weeks and Chase did VERY well through his NICU/surgery journey. He was in the NICU for 4 weeks and now his biggest issue is weight gain. He will be 2 in June and is just about 20 lbs (give or take a few ounces). My other children are on the smaller side as well, so we aren’t sure if his size is genetic or CDH related. Would love to chat/hear from you when you have time!

  32. Katie says :

    My baby was diagnosed with right sided cdh at 19 wks. We have been having some other complications like a possible c-cam and growing problems. My doctor says that if she continues not to grow, we will have to take her early. Right now I am 33 weeks, and if everything goes ok from now, i will be having a c-section at 39 wks. Her liver is up in the chest, but i think that the biggest concern now is when she will be born. Unfortunately, the doctors are obligated to give us the statistics, which are not very hopeful at all. As you know, there is no way to tell how serious it could be until she is born. Thank you for sharing your story.

  33. Vikram says :

    Hi,

    Thanks for sharing your story. My wife is 24 weeks pregnant and our son has been diagnosed with CDH (left sided). Until today only the intestine are up in his chest. The stomach is below the diaphragm. We live in Singapore and have consulted several Senior Pediatric surgeons in India and Singapore. The doctors have been advising us that there is a very good chance that our child will grow up as a normal kid with no health problems. This is very the unlike the articles and blogs we have been reading on the internet which talk about long terms problems like pulmonary hypertension, respiratory porblems, growth and developmental problems, hearing loss, feeding problems, heart problems..etc..etc..
    We would like to hear your thoughts, experiences and views on this subject. Can a child with CDH grow up to be a normal kid ? Are we receiving the correct advice ?

    Regards
    Vikram

    • ittybittyblog says :

      Hi Vikram,
      Thank you for leaving a comment on my blog. I am so sorry that you and your wife are going through this diagnosis with your son.
      I am definitely not an expert on CDH, I just know our experience and what I too have seen, mostly on the internet, as I know only a couple of other children with CDH.
      There is such a range of outcomes for these babies. For my son I can say YES, he will grow up to be a normal kid. He basically has been since before he was 6 months old. He had so few additional issues and is doing very well. But I know of others who have had reherniations and have had additional surgeries and some of the other issues that you have listed.
      My best advice is to read more and gather information to help prepare yourself for this journey that you are headed on and make sure that you have a good support system and good doctors. There is really no way to know how well your baby will do until he arrives and the doctors are able to see how big his lungs are, how they function and if there are issues with pulmonary hypertension.
      I think the hardest part is the unknown, wanting to make sure that you know the outcome (and that it is a good one) before it happens. I remember wanting the same thing.
      Along my sidebar I have links listed as “CDH Blogs” and “CDH Resources”, I have tried to put a good mix of sites up there, I would recommend looking at some of those too.
      I will keep you, your wife and your son in my prayers.
      darcy

  34. Brandi says :

    I found your story so inspiring. Thank your for posting it! I am 22 weeks pregnant and at 19 weeks we were told that our little boy has a right sided CDH. After learning of how rare these are and how more severe and less chance of surviva he has, it is so comforting to hear of success stories like yours. Most of his liver and all of his intestines are in his chest now, so we have been told he has a 20-30% chance of making it, but it also seems that every doctor has a slightly different opinion, so we aren’t putting all of our trust in this one doctors statistics. They gave us the option to terminate or have inutero surgery, but with as much faith as we have in God, terminating was not an option for us and the inutero would be experimental so we opted to wait unitl he is born and go from there. He is due March 25, but will probably be taken a couple weeks early. Right now we are talking with surgeons and trying to figure out where to go. It is so exhausting both physically, mentally, and emotionally, but between God, friends, family, and all of the success stories, I am able to find peace in our situation and know that he is going to be okay. If you have any advice or insight on our situation, your comments would be greatly appreciated. I have not been able to actually talk to someone that has gone through this, especially with a child who had a right sided CDH. I would love for you to email me when you have time. Thank you!

  35. Kellee says :

    Darci,
    My husband found your blog today while we were sitting in the NICU. Our son was born one week ago with a right-sided CDH that left him with a normal left lung but only 1/3 of his right lung. We have known for almost six months that he had some abnormalities to his lung though it was misdiagnosed as a CCAM (a cystic mass). We have been followed throughout most of my pregnancy and were told by multiple doctors that the mass was “unremarkable”. While we were concerned he may have to have surgery in the future to remove the mass, we were comforted by essentially the lack of interest from the specialists. Well, needless to say were we in for a surprise when 14hrs after he was born he was in surgery. He has done well so far-“ahead of the curve” according to the team caring for him, but obviously there is still great concern on our part. Like your son, he has one undescended testicle. There is some concern about the morphology of his liver and we’re still waiting to hear about the chromosome testing to rule out any genetic abnormality. However there have been early victories. Today he was extubated and I was able to hold him for two hours. Hopefully in a couple days they will start feeding him through a tube and maybe by the end of next week we’ll start bottle feeding.
    It was very comforting to both me and my husband to read your story. We live a very active life and it would be heartbreaking to not be able to share that with our son. We hope one day to think of him only as a little boy, instead of a little boy with a lung disorder.
    Kellee

  36. Amber Campbell says :

    My daughter Alexis Grace had left side CDH. She was born on 11/30/ 2010 and we were diagnosed at 23 weeks. She had the stomach and bowel herniated. The Children’s Hospital of Pittsburgh performed her surgery which was done laparoscopic. The surgery went well and she was out of the NICU after 4 weeks. The issue after that was feeding. She ended up getting a MicKey button and a Nissen wrap for her reflux. Since we have been home there has been many ups and downs with her eating. Sometimes she eats very well by mouth other times she cries at the sight of the bottle. I am looking for some advise from other parents with children like Alexis. I need to know any hints or secrets on getting her to take her bottle all the time. She has to go 2 months without using her MicKey before they will remove it. Alexis is 4 months old now and I am planning to start cereal this week, hoping that solid foods will be more appealing to her. If anyone has any suggestions please let me know. My email is lilly230@aol.com. Thanks so much and thanks for all of your stories. It’s so nice to know that you aren’t the only family that has this trouble. For parents that are just now being diagnosed I want you to know that not all CDH stories are bad, other than the feeding issue Alexis is doing great. Her left lung is smaller than her right but it is growing well. All surgeries were done laparoscopic and the scars are almost gone. Just be prepared for a long stay at the hospital… I was not. I thought 2 weeks and we would be home, we were there for 2 months. It takes a lot of strength to make it through a situation like this but don’t worry you can do it. Just know that you aren’t alone.

    • ittybittyblog says :

      Hi Amber,
      Thank you so much for leaving a comment on my blog. I am so glad that Alexis is doing so well, yet another CDH miracle! We have been so fortunate with Owen that he didn’t have any major issues with feeding, he came home on the bottle and did pretty well with his eating. However, I know that there are many who have gone through what you are experiencing. Have you ever gotten on the Cherubs website? There are different forums for different topics and I know that there are many moms who would love to help you out with their suggestions. I have a link to Cherubs on the right side of my blog under “CDH resources”, or their address is .
      I am not sure if you have to be a member to read the forums but I am pretty sure you have to be one to ask questions or comment. I’d highly recommend it. I think you will find lots of support and help for you and Alexis.
      Good Luck!
      darcy

  37. Maria says :

    Darcy-

    Thanks so much for your inspirational story. My husband and I had secretly picked the name Owen for our baby even before we knew that he was a boy.

    A week ago we learned at our 20 week u/s that the baby is a boy and that he has a left-side CDH with only bowel in the chest cavity. After the diagnosis, the name Owen made even more sense to us since our baby will definitely have to be a “young warrior.”

    We are going for consultations with two children’s hospitals next week.

    A close friend of mine’s 12 year old daughter had the same condition and is doing great- so between her story and the current success rates that we are hearing from the children’s hospitals we are very optimistic that we will get to bring our baby home.

    Although everyone has warned me to stay off the internet, today I decided to google CDH success stories and yours with the name Owen showed up as the #1 search result. 🙂

    Needless to say, the fact that the first success story I find is about a baby with the same name as our own little boy gives me a great sense of peace and calm- your blog is another ray of sunshine to help me make it through today. Thanks again for sharing your experiences.

  38. Carol says :

    Hi darcy~

    I appreciate you sharing your journey with us! I am 20 weeks along and our little girl was diagnosed with left sided CDH last week. We are meeting with a specialist tomorrow so we are anxious and making our list of questions to ask. My husband and I are trusting God will see us through this whatever the outcome. I was wondering if you could forward some of the verses you used to get you through your journey. Again, I appreciate your willingness to be a sounding board for others who are facing the same situation!

    Carol

  39. Anitha Dayanand says :

    Hi Darcy,
    Thanks for such an informative blog – i just wish i had come across it earlier. I am a mother who lost my baby a fortnight back to this dreaded condition called CDH. Unfortunately inspite of the innumerable scans & ultrasounds none of the doctors were able to detect this during my pregnancy due to which we were totally unprepared. We did not even know what CDH meant & had to search the net for more info on CDH. The hospital in which i delivered had no facilities to treat my baby & lot of time was wasted in transfering the baby to a hospital with such a facility & for the doctors there to do their own diagnosis & checks. It was heartbreaking to see the baby on an ECMO throughout & not hold her close to you. The doctors could not perform the surgery as the baby could not be transferred to a normal ventilator. We lost her on the 13th of April & I cant explain what me & my family is going through. Also I feel surprised at the lack of awareness on this condition in this part of the world (Middle East) & feel that CDH should be a compulsory part of pre-natal check up. Its heartwarming to read success stories like yours & we wish all the very best to you & your family.

  40. porsche dawson says :

    Hi i know it have been a minute but my baby have cdh and im a single mom of four and i have alot of questions and intrested to know more im really scared and never been through any thing like this.

  41. asaneth flores says :

    my son isaiah akin flores was born with and undiagnosed cdh i was so excited to have a baby boy i had a csection and when he was born the doctors were taking forever to let me see him i felt there was somthing wrong but i was so excited he was finally here i went to recovery and thats when they told me his organs was in his chest he was in the hospital for 7 weeks i finally have him home with no oxygen not machies just 2 medications for oral thrush and a vitiman i wanted to ask how it is having a cdh baby at home cuz i worry it my first day home with isaiah and im scared how do the react when they get a cold can they live a normal life please i need so advise

    • ittybittyblog says :

      Dear Asaneth,
      Thank you for leaving a comment on my blog. I am sorry that your little guy was diagnosed with CDH. I sent you an email yesterday, it may have gone to your junk mail.
      You and Isaiah are in my thoughts.
      darcy

  42. Kellee says :

    Asaneth,
    I feel your pain. I remember those first few weeks at home with my son and how scared I was. Every child is different and cdh affects babies to such varying degrees it’s hard to know how each child will do. It sounds quite comforting that your son is only on two meds and no oxygen. My son came home after a five week stay in the NICU. He also didn’t require oxygen and was only on two meds and a vitamin. He is now almost seven months old and is only on one med (prevacid for his stomach) and a daily vitamin. He had his first cold a few months ago and fared pretty well. He didn’t have to go to the hospital and it resolved in a week. I know there will be some setbacks but my hope is that he will be able to live a normal life with minimal restrictions and it sounds like your son is in the same boat. I think you have to just take one day at a time and focus on the positive.

  43. asaneth flores says :

    thanks for the advice.its been 2days since he has been home and so far i hardly slept cuz he only sleeps for 30min at a time he dosent want me to put him down did you have these promblems..what also scares me is he had one undesended testie and in a month got meet urologists in sept to see if its going down..if not he has to go for another surgery to bring it down i dont think your sons had that but if you know somone who did any advise would do,,my baby had to get the gortex patch idk if anyone had there but any advise would do..my baby is so amazing it really shocks me how loud he crys for a baby with small lungs..he can cry real loud..how big are your babys scar frm the op my is about 6inches long but it looks real good…does it look better with time..any advise you can give me would be good..i am so greatful my beautiful baby boy beat the odds..and amaze the doctors who told me it could be month before he would breath on his own and after 3 weeks of life he did it on his own he and on the 4th week he didnt need the cannula anymore..and he eats like a litte piggy..

    • ittybittyblog says :

      Hi Saneth,
      I don’t remember Owen having sleeping trouble, although Isaiah has only been home for 2 days now so he may just be adjusting to his new home.
      Owen did have an undescended testicle. It was on the opposite side as his hernia and his surgeon said that it wasn’t unusual since so many organs were “sucked up” into the chest cavity. We waited for the testicle to descend on its own but it didn’t. Owen had surgery to bring it down when he was almost 2 and half years old. The same surgeon that did his CDH surgery did his testicle surgery too. It was not easy since he was scared and didn’t understand what was happening but it was so much easier than what he had already been through with the CDH. He recovered from it very quickly.
      Owen’s repair was done laproscopically so he has several very small scars that have faded a lot. The only one we can really see is where his chest tube was in his side. He didn’t need a patch. I know that repairs done with a patch are more likely to need to be repaired again later so just watch for signs of reherniation:
      trouble breathing or other signs of oxygen trouble-blue lips, fingernails
      symptoms of bowel obstruction-no bowel movement, unusual vomit
      trouble eating
      Your baby is a strong little fighter and he has been through a major ordeal (as have you) it will take you both a little time to get used to life outside of the hospital and get into a routine and to feel comfortable. It is a bit scary when you leave the hospital and have to watch them all the time with no nurses or doctors to check them all the time. It does get easier!

  44. asaneth flores says :

    thanks for the advice i thought it was just my baby with and undesended testie i didnt even notice at first when the doctors said it when he was a week old during rounds…my baby scar just looks like a long scratch over his tummy it healed really well..we have out first doctors appointment tommorrow and im hoping he gained weight…i think he has cuz he is always hungry..i think your right he is used to being in the hospital..that all he ever knew since birth..

    • ittybittyblog says :

      I hope your appointment went well and Isaiah is gaining weight! Owen has I think 3 scars from his testicle surgery. They did it laproscopically so the scars are very tiny (less than a centimeter). I believe one was in his belly button, one in his lower abdomen and then one in the bottom of the scrotum. I am not sure if there are other ways they do this surgery. It was a pretty traumatic surgery for him, but he recovered fairly quickly from it.
      As far as Owen’s first cold, I don’t actually remember. I remember being so worried about him getting them but he actually did pretty well. He has had a much harder time since about the age of 2 when he started to have asthma problems that are always triggered by colds.
      Have you checked out the Cherubs website? There are different forums where you can go on and ask questions about CDH to other parents who have been through this. There is often a lot of good advice and support there. There is a link on my sidebar…They were very helpful for me when we brought Owen home from the hospital.

  45. asaneth flores says :

    how old was ur baby when he got his first cold and when ur baby had surgery to bring his testie down how did the open him up..was it a little whole ive researched it but its better to get advice for somone who been threw it thanks alot for the advice..

  46. stephstang@gmail.com says :

    i have so many questions… i just found out my baby has this condition, does cdh mean my baby will never be 100% normal? i hate how these doctors make me feel like there is no hope. They told me i could abort if i want. That it has a 20% chance to have a learning hearing, or sight disability… what should i expect?

    • ittybittyblog says :

      Thank you so much for leaving a comment on Owen’s story. I am so sorry that you are facing a CDH diagnosis. I am going to write to you directly at your email and answer a few of your questions.
      darcy

  47. hayley bevan says :

    Such a heart warming little miracle! Loved reading owens story, I am a mum of twin boys but sadly one of my sons is a angel (left sided cdh) he lived a short 27 hour> I am so thankful for the 27 hours and im glad i never gave up (or terminated my son as advised ) because having a beautiful little boy with me for 27 hours was so precious, the ebst of my life im im honest in nathans short life he tuaght me so much. Love, Miracles, life, whats important etc. Now his twin (which our angel lives on in) has just turned five and i thank god every day for our survivng son but obviously we miss our angel so much! am so glad your Son pulled through CDH turned our life upside down. We had never heard of it before our son was diagnosed at 20 week gestation. he had a lot of liver up through the diaphragm. Just wanted to say to everyone whos lifes are changed by cdh , never give up on your baby miracles do happen even if its just having your baby for a short time (precious memories will live on forever)! When we had our twins we couldnt find much out about twins with cdh so if anyone wants to ask any questions please feel free to email me xx

    • ittybittyblog says :

      Dear Hayley,
      Thank you so much for leaving a comment on my blog. I am so sorry that you lost one of your sweet babies to CDH. This disease is so terrible. But what a blessing to be with him for 27 hours and to have that time to cherish for the rest of your life. I appreciate that you posted this. I get many comments (as you probably read) of people who have been advised to terminate. We were diagnosed late and it we were never advised to terminate, nor would we have it we were advised to. But for other people searching to hear you say that you are thankful for that time with your son means so much.
      Miracles come in many shapes and sizes and I am glad that you had such precious time with your little one before he passed and that you have his brother here on earth with you!
      Thanks again for posting.
      darcy

  48. Sarah Holley says :

    I just randomly stumbled upon your blog and was amazed to read your story. We live near Seattle, WA. My son was born on December 27, 2006 and was born with a Congenital Diaphragmatic Hernia, his name is Owen James as well.
    He is 5 now and full of life! He shows no real signs of problems which we are extremely thankful for. He only needs an inhaler when he has a cold but nothing has really held him back. He has an immature left lung but oddly enough his favorite thing to do is sing and sing very loud!!
    I hope you and your family are doing well and again it was incredible to hear your families story and to see so many similarities!

    Thank you,
    Sarah

  49. fran says :

    Our baby girl was also diagnosed with cdh and despite the terrible situation she is doing amazingly well. Her story is very similar to owens except she didnt need the chest tube. Its great to know that others have success story for such a devastating thing to go through. Although our baby is much younger than owen(2 weeks) we know that the toughest times are gone and have confirmation that she will be going ho.e we just dont know when. Thank you for sharing your story

    • ittybittyblog says :

      Hi Fran,
      Thank you so much for leaving a comment on my blog. I am so sorry your little girl has CDH. It is such a scary thing, isn’t it? We still have struggles with Owen, but it is so very different than those first days of his life. Not nearly as frightening!
      I pray that your baby girl will continue to do well and that you will get to take her home soon. What a blessing she is and she must be such a strong fighter too!
      Hang in there!

  50. Jennifer says :

    Oh my goodness your story is exactly like my sons except his was a left diaphgragmatic hernia and it was only a small portion of the intestines. My question is, did your son have a pAtch? Ours didn’t and he is three and he has had a cough for a while and now uses an albueterol inhaler but it just scares me that he might have reherniated. I would think he would be a lot sicker. But you see that kids with patches are at a much higher risk than ones that aren’t. How did you not let your mind scare you to think he reherniated all the time? Lee was also released from the surgeons at two years old. But I just get scared. Any advice on reherniations would be so helpful right now. Thank you do much for your story.

    • ittybittyblog says :

      Thank you so much for leaving a comment on my blog. I am so glad that your son is doing so well! It is so hard to let go of some of these fears, isn’t it? I remember for the longest time just wishing I had a hand held x-ray or ultrasound machine to keep at home so that every time I worried that he had reherniated I could just “check real quick”.
      Owen does not have a patch. His hole was relatively small and they were able to use all of his own tissue to close him back up. I worried for awhile about him reherniating but I think we are far enough out now that the chances are so small, especially without the patch. You are right, the patch really increases the chances for reherniating. Owen has had two chest x-rays one at 4 (last March) and one at 5 (this March) when he was having a tough time. His right lung is the compromised lung so if he has a bad cold (or most recently it was the flu) he has diminished breathing sounds on that side. To a doctor that isn’t used to seeing (or hearing) him (like ER or Urgent Care) they tend to err on the side of caution and do the x-ray, which I am always thankful for.
      Does your son see a pulmonologist or any other specialist for his breathing? We had only been to the pediatrician who had prescribed inhalers for him. They just didn’t seem to work very well and so I took him to an allergy and asthma specialist and that has made all the difference for us. She felt that the inhalers just weren’t getting in him well enough to be doing any good. She said she thought that kids just had a hard time getting the technique down so that they could get all the medicine in them. She switched Owen to nebulizers which he has been doing for just over a year now and he has done so much better with them. We have an “asthma action plan” that allows me some wiggle-room in upping his dose if he is struggling without having to head in for office visits.
      As for how I keep myself from worrying about it is that from the stories that I have heard about others reherniating, the symptoms are often so minor compared to our initial experience with them at birth. These little ones are in such distress when they are born and it is easy to think that if they reherniate they will be back to that vulnerable position immediately. Now obviously it is serious and needs to be fixed, but it isn’t the emergency that it is at birth (unless there are other complications). Knowing that has helped me to feel that while it would be another surgery which of course I don’t want, it isn’t like that initial trauma either.
      I hope that helps, please feel free to email me or post another comment. I’d be happy to keep chatting if you’d like.

  51. rachel says :

    Thank you for sharing your inspirational story. I am 37 weeks pregnant with a CDH baby. Your story gives me hope.

  52. lisa laverne platt says :

    Our baby girl was diagnosed 20wk scan and we’re heartbroke. I’m 28wks.pregnant now docs said too much fluid around her + need to go in hospital asap as they say I’ve developed gestational diabetesas well as baby having diagragmatic hernia. I’m very ill and also have infection down below for seven wks. So upset! Got grace 11 oliver 6 and lily 2. I’m 42 and no family,feel so alone! !please helpxxx

  53. Meghan says :

    Thank you for sharing this incredible journey on here! My husband and I just found out that our baby has CDH on the right side. I am 21 weeks, they are doing genetic testing on the amniotic fluid. We found out in the morning we were having a boy and it is our first baby! Then in the afternoon we found out the baby has CDH, we were crushed. We know of no one who has had this problem and I told my husband and mom that I just wished I could talk to other mothers who have been through this. Then my friend found your page and facebooked it to me. After reading it, I felt better, that there are others out there willing to share and who know what we are going through. They are telling us this is pretty bad considering his entire liver has moved into his right chest cavity and is taking up pretty much all of it. We are going to Cincinnati, which is 4 hours from our home to do what we can for our baby. We will make this work! Thanks again for giving us hope that our baby will survive and have a good life!!

  54. Chiquita says :

    Please pray for me and my family i am 39 weeks and very nervous because i am due any day now and my son has CDH . Im so scared and i do not know what to expect.

  55. Kelly G says :

    We have just had our bub diagnosed through our 18 week anomaly scan at 19weeks 4days. I am set to have an MRI and echocardiogram tomorrow to assess how bad it really is. Our bub has a posterior left hand side CDH with the stomach in the chest, heart pushed to the right and they are checking that the heart doesn’t have abnormalities (a hole). We were absolutely devastated by the diagnosis and have since pulled ourselves together and told ourselves that we need to be positive and send positive thoughts to our baby so that it will be strong and survive through this uphill battle.

    We have been told that our score is 0.6 which is basically a 50/50 chance they have said. I believe that while there is a chance, I’m going to ride that chance until there is nothing left in the tank and whatever happens is out of my hands. At least I have given our bub the best possible chance.

    The funny thing is, the nurses are quick to instruct you to “interupt” the pregnancy. After coming home from the hospital and hearing everything you then start to absorb and comprehend what was actually being said. It’s like you are moving in slow motion at the time they are telling you all of it. I wish I could have recorded what they said so that I could remember all of it. It is honestly just a blur.

    My husband and I would never dream of “interupting” (basically terminating) the pregnancy. It is not an option for us and we believe that it is not our decision to make. I can’t make that decision for a life that is still fighting and growing inside me. It would be wrong for me to be so pessimistic. I have to let bubs have the same chance that I was given at life.

    So tomorrow when I go for my fetal MRI and echocardiogram I will be more alert and armed with the knowledge that there ARE success stories out there and these success stories have come from all ranges in that severity spectrum. I will be telling those “negative nurses” that there is NO WAY I will be aborting my child and that if they will not support our decision in this then I will not have them participating in the intensive care of our child. I just think that you need positive minded people around you during this and negativity always brings you down and zaps the life out of you.

    I said right from the start, I don’t care if it’s a boy or girl; I just want a healthy bub. I also said that even if it had a major disability or abnormality that needed repair I would always keep bub and hubby and I would bare the struggle together. We have tried for far too long to try and fall pregnant and after a miscarriage we will do everything medically possible to keep this bub with us.

    Thank you for your amazing story. I hope that our story will be a positive outcome just like yours so that I can share my experience with everyone going through this same rollercoaster journey. Thank you for the hope that you have given us.

  56. gabriella russell says :

    Heya your story is wonderful well i found out on the 18.02.14 that my little kaycie-Anna has diaphragmatic hernia on her right side too well i was wondering if you wouldn’t mind having a chat with me please email me or text me on 07538718022 would be lovely to hear from you xx

  57. gabbierussell24 says :

    Please could you email me at gabbierussell24@hotmail.com or text me 07538718022 im 20weeks2days now a girl with right sided cdh with liver and some bowel in the chest cavity im 19 and very scared please could someone talk

  58. alan says :

    Thank you very much for sharing Owen’s story with us. You are really Godsent. Our grand-daughter, Lynette Elizabeth was born just a few days ago, on the Feast of Visitation. She too has a hole on the diaphragm and dynoised as (CDH)She is going for surgery tomorrow to correct this adnormality. Please pray for her. Thanks and God bless.

  59. proceedwithextracaution says :

    I just found out at my 20 week scan that my baby girl has left sided cdh. I’m literally a wreck. I’m trying to find stories like Owen’s to help me stay positive that she can pull through this. I would love to talk more and prepare myself for what is to come. Thank you

    • Kena Flores says :

      There are many amazing stories of CDH babies, feel blesed and lucky because your baby was diagnosed in utero. It is devastating news for you but is the best for your son. And it will give you time to be prepare. I was
      diagnosed in Mexico and I had to go to USA for my baby to be born there, thanks to the people at USCF my baby is a healthy and handsome 2 year old.

  60. Kena Flores says :

    Thank you for sharing your story, mine is very similar. Emilio my son had CDH and now is a handsome healhy 2 year old boy. But I am
    intersting on the follow up. Can you let us know how are you doing and if your son is living a nomal life?

  61. Christina says :

    Hello I am expecting a boy with CDH in late June. I just failed my 1 hour test and now going to get have my 3 hour glucose test, any advice of dealing with gestational diabetes and a CDH baby?

  62. Emily Whitty says :

    Hello, my name is Emily Whitty and my husband Nick and I are expecting our first child ( a little boy ) on Feb 3rd 2016. We were informed of his right sided congenital diaphragmatic hernia at our first ultrasound at 20 weeks. I feel so hopeful after reading what you’ve written about sweet little Owen. I would love to connect with you if you’re able.

    • ittybittyblog says :

      Hi Emily,
      I am so sorry that you are facing a CDH diagnosis with your little guy. I will email you directly:) darcy

  63. Katelin says :

    My baby girl was diagnosed with a diaphragmatic hernia at 34 weeks. We don’t know how severe the case is just yet but your story truly gave me hope. Glad to know the odds are good. Thanks so much for sharing your story!

  64. Filippa says :

    Hi my messaging on behalf of my friend, Georgie she just found out her little boy has CDH and is very upset would be nice if you could talk to her and give her your story and advice as she feels so alone.

    Thank you

  65. Michelle Stender says :

    Hi, my name is Michelle Stender and my son
    was born with CDH on his right side, it wasn’t discovered till he was a year old and everyone
    thought he had horrible asthma. After he was diagnosed the doctors immediately intervened
    and put a patch on his diaphragm. We have had a wonderful six years but now sadly his doctors believe that his patch has a rupture and my son will have to have another patch, and the possibility of lots in his future. I had no idea how dangerous CDH is and how blessed I am to have my son.
    Thanks for letting me just talk about it.
    Michelle Stender

Trackbacks / Pingbacks

  1. A Missed Anniversary « Ittybitty Blog - January 30, 2009
  2. Owen at Two « Ittybitty Blog - March 16, 2009

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