Wednesday, April 14, 2010

Our Journey with Duodenal Atresia

I'm taking a step away from the normal scope of my blog to talk about the past few months of my life with the birth of my son and our experience with his birth defect.

The first glimpse of a problem came at my 24 week doctor's appointment. I went in to get some additional shots of the little man's heart because he was uncooperative during the 20 week ultrasound. His heart looked great, but the tech was troubled that she didn't see the stomach empty during the exam and the doctor called for a recheck at my next visit. During the next visit the stomach was still full and the tech became very quiet. The doctor explained that they saw the "double bubble" that was characteristic of a congenital birth defect called duodenal atresia. This defect was an obstruction between the stomach and intestines that occurred in 1 in 2500 births and was easily corrected surgically after birth. The part where my heart sank was when my doctor also explained that 1 in 3 babies with duodenal atresia also had Down's Syndrome. Please note that these were the statistics given by my doctor. I've seen quite a variation on these numbers on the internet.

Next we saw a perinatologist for a more detailed ultrasound that confirmed the diagnosis and opted for an amniocentesis to know if we were expecting a special needs child. The next few weeks were filled with appointments and worrying. Pediatric cardiologist to look for heart problems (no heart problems found), pediatric surgeon for a consultation (very helpful and reassuring), and continued weekly monitoring by my normal OB GYN and perinatologist (due to the obstruction the mother has excessive amniotic fluid, making for a higher risk pregnancy). The amnio results came back that he didn't have Down's Syndrome, which decreased our stress level considerably and made me happier than when I found out I was pregnant. Things were looking up.


Then came week 33 of pregnancy. I was larger than I should be due to the excess fluid and I was feeling it. My back hurt, my pelvis hurt, my ribs hurt. Riding in a car, sitting down, and laying down for more than a few minutes hurt. Needless to say there wasn't a lot of quality rest anymore. I went to my OB GYN for my weekly fetal nonstress test and he wasn't very active (it was hard to feel movement with the increasing fluid), I'd lost weight since the week before, and my blood pressure was higher than my normal white coat anxiety issues. I was sent to the hospital for a 24 hour urine collection and to be monitored. Everything was fine at first--lots of fetal movement in the ultrasound and good heart rate, so I sent my husband home for an overnight bag. Then the fetal heart rate dipped twice and another ultrasound showed he wasn't moving around much. Additionally I was having contractions (that I couldn't feel beyond the discomfort I'd already been experiencing) and my cervix was beginning to change. My doctor and perinatologist decided it was best for the little man be born, and via a c section since he wasn't tolerating the contractions well. I called my husband and told him to get back for the birth. By the time I was prepped he was back and we went for the c section. After the birth little man was taken to the NICU to be stabilized and assessed. My husband was able to take pictures and he tells me that the team showed me the baby, but I don't remember it at all.


The next day he was brought to my room for a few minutes before going to the children's hospital. I was able to reach in and touch his sweet little face and hands and fall in love. Then he was transported across the street to a children's hospital where he was assessed and prepared for the surgery to correct the defect. My husband went with him with some family and friends while I was stuck in the hospital with some other family and friends. They looked for heart problems (there were no problems) and further examined his GI track via X ray.


Here is little man prior to his surgery at the NICU at the children's hospital.


He went into surgery late afternoon and everything went well, but it was a long and emotional day.

The next day I was given a pass to visit little man. He was being given nutrition via a PICC line (peripherally inserted central catheter) that ran from his right foot to his heart because he wouldn't be able to eat for some time. He had a nasogastric tube to drain the fluid in his stomach. He was on a ventilator and was given pain medications. He had a variety of monitors. In short, he was wired.


Now came the road to recovery. We were first waiting for signs that he was ready to eat. 1. The fluid drained from his stomach had to go from a sludge like color to clear 2. He needed to demonstrate that his bowel had woken up (aka he needed to poop.) While we waited for this progress to be made we had some other milestones. Two days after surgery he was off the ventilator and pain medication. Three days after surgery we were able to hold him for the first time. The first requirement was met seven days after surgery and the tube was removed from his nose. We left the hospital that evening told that they would insert a feeding tube in the morning to initiate feeds.








The next morning we got a call that there was a shift in the game plan. Little man would try bottle feeds and if that didn't take off he would have a feeding tube placed. Needless to say we were thrilled at the prospect of "skipping" a step on the road to recovery. At first he was fed 5 ml of pedialyte every 3 hours. Over time his feeds were increased 10 ml and later 15 ml.


Little man was doing well with the feeds, so he was switched to breast milk and the feed volumes were steadily increased.

Little man's recovery was going so well. His PICC line was removed twelve days after surgery and we were told that as long as he continued to do well with his feeds and gained weight he'd go home. That's when we hit the one snag in his recovery. He ate well, but wasn't gaining weight. The doctors decided to begin fortifying the breast milk with formula powder to beef up the calorie content. That did the trick and we were able to take little man home 17 days after surgery. Below is little man waiting in his going home outfit for us to finish up the discharge paperwork and our first family photo at home.













I hope this could be an encouragement to others. After the diagnosis I spent a lot of time on the web looking for personal experiences. Reading message boards and blogs helped me a lot. This process went much better than I could have imagined. Our surgeon told us that our son would be in the hospital for three to eight weeks, so we were so happy to have him home at two and a half weeks. That being said there were hard moments, tears, and uncertainty. It was hard hearing babies crying in the other rooms during my recovery in the hospital and not having him there with me. It was hard being discharged without him. It was hard leaving him at the children's hospital each evening. Having little man in my life is amazing, but I truly understand now that having a healthy baby is a blessing and not a given.

Through this experience I've been overwhelmed by my wonderful family, friends, and coworkers. Another group that has a special place in my heart is the medical team that worked with little man. The doctors, NICU nurses, and additional staff at the children's hospital were amazing and made some of the hardest days of my life as pleasant as possible.

Now little man is sleeping on me after a scream fest and all I can think is that this is the best good time to be had.

17 comments:

  1. Dear Heather,

    I found your blog while surfing for "duodenal atresia". My son was born with the same condition. After surgery and 3 weeks in the NICU he came home. We just celebrated his first birthday on saturday and all is well. Hang in there.

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  2. Thank you so much! Our little guy is doing so well and I'm encouraged to hear about your little guy.

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  3. Heather,
    Thanks for posting this story. Our little guy is 30 weeks right now. We first saw the double bubble about two weeks ago. It was too late to have the amnio to determine whether or not he has down syndrome. As of my last check, I didn't have any extra amniotic fluid, and I hope I can get my little guy big enough so he can be strong for his surgery. The two hardest things for me right now are wondering will he or won't he have downs and how long will it be before I get to hold him.

    Best of luck to you. Hope your guy is growing strong.

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  4. Laura-

    Those are two hard things to think about! The beginning is rough, but know that the rough start will just make getting to "normal life" that much sweeter. You're in my thoughts.

    Our little guy is doing great and I must say I don't even notice his scar everyday now.

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  5. Hi there, I know you wrote this a year ago but I am hoping to maybe connect w/ you. My daughter has DA and is currently in the NICU recovering from her second surgery. She is 3 weeks, one day old today and recovery is taking forever. The first surgery did not fix the blockage. We waited 2 weeks and then did her second surgery. She is just 5 days post-op and though there are positive signs she's recovering, she is still having a TON of output through her NG tube (over 100 ml a day). Just hoping maybe you would email me and tell me more about your story and I could share more w/ you. We are feeling very alone here-not only b/c of her condition and NICU stay but b/c she's now dealt w/ this for so long and the end is no where in sight. Thank you.
    attiesgirl05@gmail.com

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  6. Dear Heather, thank you for posting your story. My baby has duodenal atresia and it makes such a difference being able to read about what others have gone through. It was lovely to see an update at a year!

    Good luck with your running, being 33 weeks at the moment I'm missing such exercise.

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  7. mushypeas-

    I'm so happy that the posts helped! Little man in nearly three now and doing great. It is a really rough start, but you do get to normal life and appreciate it that much more.

    We welcomed our second baby in early November, so I apologize for taking so long to reply. Have you had your baby yet? I hope you have as easy of a road as possible!

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  9. This blog has been so helpful , my daughter was just born a week ago and she has duodenal atresia , she just had the surgery twenty-four hrs after delivery my story is just like yours except my daughter has developed jaundice since the surgery I'm just hoping and praying that everything works out fine and soon I will be able to take her home and enjoy her .

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    1. I'm so glad this entry was helpful. I'm thinking of your little lady. This rough start makes going home such a sweet day and makes you really appreciate getting to the normal.

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  10. I just found out today that my little girl has DA. I am more worried about the surgery and recovery time then I am if she has DS. I will love her no matter what. It is good to see positive outcomes. I know God is in control, but waiting to get into the high risk doctor is dragging me down.

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    1. The surgery and recovery are stressful times. My little man is now 4 and I must say from diagnosis to being cleared on our last follow up by his amazing surgeon was the hardest experience that I've had. That being said, just know there will be great time with your little one during those hard days and the days beyond! We're at the point that I don't notice his scar (although it is most definitely there) and we're happily wrapped up in learning to swim, soccer games, and touring preK for the fall. I'm thinking of you and your sweet girl and hope you have the smoothest journey possible.

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  11. Hi there,

    I found you while desperately searching for DA on internet. I think that we have a similar story and I really need someone to share similar experiences.

    My son had DA surgery when he was 1 day old and spent 2 wks in NICU. Then we spent a wonderful 1 month at home, he was gaining good weight. He had some vomiting (yellow colored) issues at small amounts but the dr.s told not to worry about it as it can be normal as his intestine is still large and plus they told he has some reflux issues which is quite common after this surgery. Then suddenly one night after 1 month from the surgery he started to refuse feeding, he wasn't ok and he vomited very large amounts. We took him to emergency immediately and x-Ray showed there were adhesions at several locations on his intestine. Dr. who did the first surgery told this may be a complication from the operation as the scar tissues may cause adhesion which can lead to further blockages. He wanted to deal with it w/o surgery and waited for 2 days with feeding through vein, etc..(standard procedure as you are also familiar with) but his condition went worse and he had another surgery to remove adhesions. Now he is at Nicu again which is like nightmare and each surgery brings a risk of new adhesions. He is only 6 wks old and I am so devastated for these hard things he has been through. I really need someone to share experiences. Many thanks in advance for your sharing with a desperate mom, God bless our kids.

    Hoping to hear from you..

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  12. Dear Savaşcı Bebek, I am worried about your child. Is your child healthy now? Could you please tell me a little about your new story ?

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  13. Dear Heather, my daughter has DA and went through the surgery, she is currently 2 months old. I know your post was dated May 2014, but I would like to check with you on the journey after recovering from the DA surgery. Cos Yiu wrote that your son is 4 years and he seems to be leading a normal life after the surgery.

    The reason I’m writing to you is because all the posts I read online only stated the initial part of DA (from diagnosis to surgery), there isn’t much post on babies after the surgery and their life after.

    Do the babies live a normal live after the success surgery? Or is there anything I have to look out for.

    Pearlie Quek

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    1. I remember thinking the same thing when I was looking for other stories out there--there isn't a lot about these kids later. Over the summer I will put out another blog post to hopefully fill that void, but in the mean time let me share with you our update.

      My son is now 8 years old and living a perfectly normal life. He's in school and doing well, loves playing with his friends, is taking violin lessons, and our only doctors visits this past year have been normal well child visits and to get stitches in his chin after an accident at the swimming pool. Medically, all is breathtakingly boring! And when he was your daughter's age I craved this boring!

      The only time his past with DA has come up at all was when he was 6 and had a very nasty stomach bug. We took him to the hospital because he couldn't keep anything down and we were concerned about dehydration and if there was an issue with the DA surgical repair. During his evaluation they did to a swallow study where they observed him drink a tagged liquid and watched it pass from throat to stomach, to bowels, and through bowels. There was no problem at all with his surgical site (it was just a very bad stomach bug), but the hospital was only too happy to address that concern for us.

      He has started asking more about his scar in the past year. He's expressed that he wishes he didn't have a scar, but seemed to settle down after I explained the purpose of the surgery he'd had. I do think it may be the age (he has also said that he's not a fan of his smile and is starting orthodontic work).

      I hope that puts some of your worry to rest. It takes time, but life does get very normal for a DA kiddo!

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    2. Dear Heather

      Thanks for sharing!!! It really helps to ease my mind and heart. Chloe (our darling daughter) was born on 1st March 2018, on day 5 she went through the surgery to correct the DA; she was discharged on day 16.

      So far she’s doing very well, beside still having a tiny hole in her heart and filar cyst at her tail bone,
      which doctor said that it’s nothing to be worried of. However, as a mother my only wish is for her to be healthy and happy. So far the pediatrician told us that we should not be worried of anything and said that she looks normal (no indication of DS).

      I really felt grateful to have seen your post and learn that DA babies can lead a normal life. Your post surely can really put a lot of mothers like us to rest!!! And I’m really looking forward to hear more from you. ;)

      Kudos!!!

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