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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.