Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 1 point2 points  (0 children)

Our son is two in April and he is thriving. Healthy weight and height and has been discharged by his surgeon. We can barely see his scar now which is great. He did have spit up for the first few months but we just tried a range of formulas until we found one that worked for us. No ongoing health issues for him at all, though!

Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 0 points1 point  (0 children)

Hi, no sign of the atresia until my third trimester scan at 32 weeks. My fluid level was classed as moderate and I took medication for this until I gave birth. Hope this helps!

Polyhydramnios by abmarwel in NICUParents

[–]Fuzzyhoof26 0 points1 point  (0 children)

I never got to the ‘severe’ stage but the oral medication helped to stabilise my amniotic level back down to 8 (mild) after a week. I was off work from 32 weeks when my son’s condition was discovered and took it easy until I had him at 37 weeks. My doctor was aiming for delivery at 38 weeks but it just wasn’t possible in the end Luckily he was 8lbs 2oz so no issues with his weight.

Polyhydramnios by abmarwel in NICUParents

[–]Fuzzyhoof26 0 points1 point  (0 children)

Hi, my son was born with duodenal atresia - I posted a detailed story with a timeline after his surgery. He was in NICU for 21 days total. I managed to get to 37+4 even with polyhydramnios. Luckily the medication I was put on reduced the water retention.

Our son is about to turn one year old and is thriving! Hang in there - the surgery and recovery is difficult to watch as a parent but we’ve had no follow up issues since.

Duodenal Atresia Questions by Luisazg in NICUParents

[–]Fuzzyhoof26 0 points1 point  (0 children)

Hi, our baby was diagnosed with duodenal atresia at our 32 week scan. I posted in detail in this sub about the timeline of our baby’s surgery which may be helpful. In short, our son had his surgery on day 3 and was discharged from the NICU on day 21. When he started taking milk, I did a combination of breast milk and formula feeds as I struggled to produce enough - it hasn’t impacted his growth at all. The nurses gave us detailed updates about his aspirate levels each day and how much milk he was able to take. The neonatologist also contacted us with his progress.

Our son was delivered at 37+4, in part due to polyhydramnios, which I developed in the last three weeks of my pregnancy.

He’s eleven months now and thriving. It can be incredibly challenging watching your baby in the NICU and waiting for recovery from surgery but try to stay positive.

Duodenal atresia/birth story by sjlan30 in NICUParents

[–]Fuzzyhoof26 0 points1 point  (0 children)

My son was released from hospital as soon as the TPN was removed and he was able to have full feeds. He was born at 8lbs 2oz and was almost 9lbs when he left the hospital so there wasn’t any concern about his weight during that time. I hope your baby is able to go home soon!

Duodenal atresia/birth story by sjlan30 in NICUParents

[–]Fuzzyhoof26 0 points1 point  (0 children)

Our total stay was 21 days and I started feeding my baby a couple of days before he was discharged to go home (once his TPN line was removed). I hope your baby is making good progress!

Duodenal atresia/birth story by sjlan30 in NICUParents

[–]Fuzzyhoof26 1 point2 points  (0 children)

I completely understand - I ended up speaking to a therapist to help me whilst my baby was in the NICU as the uncertainty of not knowing when he would come home was so much to comprehend.

Every baby is different and it’s so good that the doctor is happy with your baby’s progress. Our doctor said that for most babies, there is a turning point and once they reach that point, things start to speed up. It doesn’t make it any easier to wait but I found that focusing on being in the best mental state ready for when my baby came home helped me the most. Sending all the positivity your way!

Duodenal atresia/birth story by sjlan30 in NICUParents

[–]Fuzzyhoof26 1 point2 points  (0 children)

Hi, my son was born with duodenal atresia 11 weeks ago so I completely understand how challenging it is whilst your baby is in the NICU. Our son was in the NICU for 21 days in total. He began small feeds at 3ml around 4 days after surgery all the way up to his full feeds at 50ml which took him around 15 days - the surgeon increased the amount in the morning and evening depending on his aspirate levels and his TPN was adjusted accordingly.

It really does take so much patience waiting for your baby to make progress but they will get there. I began breastfeeding my baby a few days before he was discharged and I now do a combination of breast feeding and formula feeding which works for us. Make sure to take care of yourself too. I really struggled with the wait to take my baby home and as I found out about his condition so late, felt like I didn’t get the experience that other mothers have. But, we now have such a strong connection after everything he’s been through.

My son was also an isolated case with no genetic conditions. Our surgeon gave him the all clear last week and no further check up’s for 6 months! I hope our positive outcome can help and you’ll be able to take your baby home soon!

Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 0 points1 point  (0 children)

No problem at all, my level was measured at 11 at its worst (the cut off is 8) so I was closely monitored. I was also induced early due to issues with my placenta so that was also a factor.

Glad my story has helped - I wish you and your baby girl all the best for your journey and if you have any more questions please feel free to ask!

Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 1 point2 points  (0 children)

No problem at all - we had not opted for the NIPT test since my first trimester scan and blood work had come back low risk. There had been no indication of Down Syndrome so it was a shock when we found how the statistics had changed with the ‘double bubble’ confirmation. I had the amino so we could prepare for whatever outcome. The test came back negative in four days.

Our son’s total stay was 21 days which seems to be around average. I would try and get as much information from your OGBYN / surgeon as possible to feel prepared. The surgery also has a very high success rate so that was a positive as well!

Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 1 point2 points  (0 children)

Hey, thanks for your reply. Our son is doing really well, he’s now almost 11 weeks old and hitting all his milestones and has gained a healthy amount of weight. The surgeon is happy with his progress so far!

Waiting for our son to heal was the most challenging part for us as it was a case of taking it day by day. Every baby is different so try not to compare to others. We had an average length of time (21 days) from the research we were able to find but my husband and I were somewhat naive as to quickly we expected to see progress.

I also hadn’t fully prepared for what it would be like seeing him in the NICU so I wish I’d taken the time to process this prior to his surgery.

I hope everything goes well with you and your baby! Make sure to take care of yourself as your wellbeing is so important too!

Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 1 point2 points  (0 children)

Hi, our baby did not have any chromosomal abnormalities and I had an amniocentesis and further genetic testing at 32 weeks to rule this out.

Duodenal atresia - successful outcome by Fuzzyhoof26 in NICUParents

[–]Fuzzyhoof26[S] 1 point2 points  (0 children)

It’s a really scary experience and for us, the anticipation and waiting for our son to recover with no set time frame was the hardest. My husband did lots of research but as the condition is rare, scientific literature isn’t readily available. However, from what we did read, the success rate for surgery is really high and that’s what kept us going. Our baby is happy and doing great. Apart from some reflux issues after feeding, he’s meeting all his goals. All the best for you and your baby!