Meconium Illeus

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LisaGreene

New member
Hi Jaime,
Welcome to the site- glad you found us. My son (now 11)had MI at birth and was in the hospital for almost 3 weeks. We had no idea about it or even knew what CF was so it was quite the surprise. He had surgery right away but it took awhile for the bowel to begin working properly.

He is doing very well now and hasn't had any real complications (yet at least) from it. He does fine with enzymes and is a very happy little boy (or shall I say, young man. He's growing up!). Best wishes to you- keep us posted on how things go.
Hugs and Hope! Lisa
 
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LisaGreene

New member
Hi Jaime,
<br />Welcome to the site- glad you found us. My son (now 11)had MI at birth and was in the hospital for almost 3 weeks. We had no idea about it or even knew what CF was so it was quite the surprise. He had surgery right away but it took awhile for the bowel to begin working properly.
<br />
<br />He is doing very well now and hasn't had any real complications (yet at least) from it. He does fine with enzymes and is a very happy little boy (or shall I say, young man. He's growing up!). Best wishes to you- keep us posted on how things go.
<br />Hugs and Hope! Lisa
 
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sdavis227

New member
When I was around 20 weeks pregnant they found an echogenic bowel on my son as well. This is the reason we did genetic testing on DH and I to find out that it was most likely CF. We did follow up screenings as well and the "white spot" never changed so they were not worried about it. He was born and we spent 6 days in the NICU - he did not have to have surgery it was all fixed with an enema.
I do believe the percentage is about 20% in newborns born with CF.
 
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sdavis227

New member
When I was around 20 weeks pregnant they found an echogenic bowel on my son as well. This is the reason we did genetic testing on DH and I to find out that it was most likely CF. We did follow up screenings as well and the "white spot" never changed so they were not worried about it. He was born and we spent 6 days in the NICU - he did not have to have surgery it was all fixed with an enema.
I do believe the percentage is about 20% in newborns born with CF.
 
S

sdavis227

New member
When I was around 20 weeks pregnant they found an echogenic bowel on my son as well. This is the reason we did genetic testing on DH and I to find out that it was most likely CF. We did follow up screenings as well and the "white spot" never changed so they were not worried about it. He was born and we spent 6 days in the NICU - he did not have to have surgery it was all fixed with an enema.
<br />I do believe the percentage is about 20% in newborns born with CF.
 
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ajb900

New member
My daughter had meconium ileus at birth. We did not know she had CF until after she had emergency surgery. She was in the NICU for 28 days. Had surgery when she was 4 days old to repair a puncture that occurred while trying to dislodge the obstruction. She had an ileostomy for 3 months, then had it reversed and no issues since. I don't have any stats on this, but I feel like most of the time a MI can be fixed with enemas and a short stay in the NICU. And the fact that you already know about it probably helps. I hope all goes/went well.
 
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ajb900

New member
My daughter had meconium ileus at birth. We did not know she had CF until after she had emergency surgery. She was in the NICU for 28 days. Had surgery when she was 4 days old to repair a puncture that occurred while trying to dislodge the obstruction. She had an ileostomy for 3 months, then had it reversed and no issues since. I don't have any stats on this, but I feel like most of the time a MI can be fixed with enemas and a short stay in the NICU. And the fact that you already know about it probably helps. I hope all goes/went well.
 
A

ajb900

New member
My daughter had meconium ileus at birth. We did not know she had CF until after she had emergency surgery. She was in the NICU for 28 days. Had surgery when she was 4 days old to repair a puncture that occurred while trying to dislodge the obstruction. She had an ileostomy for 3 months, then had it reversed and no issues since. I don't have any stats on this, but I feel like most of the time a MI can be fixed with enemas and a short stay in the NICU. And the fact that you already know about it probably helps. I hope all goes/went well.
 
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Mommy2Zeke

Guest
Zeke showed Echogenic bowel on his 20 wk ultrasound, but we didn't know about it until we switched doctors. It didn't actually show up again and we thought we were in the clear. We didn't do CVS testing to check for CF because the doctors really didn't think there was an issue. He was born with MI but they didn't figure it out for 3 days. He had to have his first surgery at 3 days old. They didn't have to take out any bowel at that point, they just made an incision along the length of the bowel and removed the blockage, then sewed the bowel back up.

Normally, that is how it goes, but Zeke had another incident at 2.5 months old and had what is called Midgut volvulus with malrotation. They had to do another surgery for that, but in a perfect storm of circumstances, the blood supply to his small intestine was damaged during that second surgery and caused necrotizing enterocolitis. He's had three more subsequent bowel surgeries and is finally doing well enough to be considered completely out of the woods. Our story is VERY VERY RARE. So I wouldn't be too concerned that anything like that will happen with your baby's standard MI. It's great that you found out so early. You'll have time to adjust and I think that would have made a world of difference in our situation had we known.

BTW, Zeke's initial stay in NICU was 21 days I think.
 
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Mommy2Zeke

Guest
Zeke showed Echogenic bowel on his 20 wk ultrasound, but we didn't know about it until we switched doctors. It didn't actually show up again and we thought we were in the clear. We didn't do CVS testing to check for CF because the doctors really didn't think there was an issue. He was born with MI but they didn't figure it out for 3 days. He had to have his first surgery at 3 days old. They didn't have to take out any bowel at that point, they just made an incision along the length of the bowel and removed the blockage, then sewed the bowel back up.

Normally, that is how it goes, but Zeke had another incident at 2.5 months old and had what is called Midgut volvulus with malrotation. They had to do another surgery for that, but in a perfect storm of circumstances, the blood supply to his small intestine was damaged during that second surgery and caused necrotizing enterocolitis. He's had three more subsequent bowel surgeries and is finally doing well enough to be considered completely out of the woods. Our story is VERY VERY RARE. So I wouldn't be too concerned that anything like that will happen with your baby's standard MI. It's great that you found out so early. You'll have time to adjust and I think that would have made a world of difference in our situation had we known.

BTW, Zeke's initial stay in NICU was 21 days I think.
 
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Mommy2Zeke

Guest
Zeke showed Echogenic bowel on his 20 wk ultrasound, but we didn't know about it until we switched doctors. It didn't actually show up again and we thought we were in the clear. We didn't do CVS testing to check for CF because the doctors really didn't think there was an issue. He was born with MI but they didn't figure it out for 3 days. He had to have his first surgery at 3 days old. They didn't have to take out any bowel at that point, they just made an incision along the length of the bowel and removed the blockage, then sewed the bowel back up.
<br />
<br />Normally, that is how it goes, but Zeke had another incident at 2.5 months old and had what is called Midgut volvulus with malrotation. They had to do another surgery for that, but in a perfect storm of circumstances, the blood supply to his small intestine was damaged during that second surgery and caused necrotizing enterocolitis. He's had three more subsequent bowel surgeries and is finally doing well enough to be considered completely out of the woods. Our story is VERY VERY RARE. So I wouldn't be too concerned that anything like that will happen with your baby's standard MI. It's great that you found out so early. You'll have time to adjust and I think that would have made a world of difference in our situation had we known.
<br />
<br />BTW, Zeke's initial stay in NICU was 21 days I think.
 
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kboyd

New member
Wow, we have very similar stories. My daughter, Trinity, was born on January 26. We did not know she had CF until she presented with MI, was taken for emergency surgery, had an illeostomy (for 3 months), and stayed in the NICU for almost a month. It has been quite a year. I am glad she is our first-born as I think it would be harder to have a "normal" first child, then one with additional needs afterward as it would seem like so much extra work. Now it's just part of our normal daily routine. Well...getting there anyway.
Katrina - we're in this together, folks! Keep reaching for a cure! CF will stand for Cure Found!!
 
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kboyd

New member
Wow, we have very similar stories. My daughter, Trinity, was born on January 26. We did not know she had CF until she presented with MI, was taken for emergency surgery, had an illeostomy (for 3 months), and stayed in the NICU for almost a month. It has been quite a year. I am glad she is our first-born as I think it would be harder to have a "normal" first child, then one with additional needs afterward as it would seem like so much extra work. Now it's just part of our normal daily routine. Well...getting there anyway.
Katrina - we're in this together, folks! Keep reaching for a cure! CF will stand for Cure Found!!
 
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Linda2012

New member
My son had echogenic bowel on his ultrasounds, which prompted them to test my husband and I. We did not get an amnio and therefore did not know for sure that he had cf before he was born. On the first and second day, he was not eating and was extremely sleepy. He also started to vomit a florescent green substance. At that point they took him and took x-rays. They transferred us to the children's hospital, where we stayed for 5 days in the NICU. During this time they ran tests and were able to remove the blockage through enemas. After they eliminated all other possibilities for the MI they moved us to the pulmonary department and started treating him for cf. We were in the pulmonary department for another 5 days until the cf results came back and we had been appropriately trained on how to care for him. Since that, we have only been back for our doctor's appointments and my son is doing well (currently 5 months).
 
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Linda2012

New member
My son had echogenic bowel on his ultrasounds, which prompted them to test my husband and I. We did not get an amnio and therefore did not know for sure that he had cf before he was born. On the first and second day, he was not eating and was extremely sleepy. He also started to vomit a florescent green substance. At that point they took him and took x-rays. They transferred us to the children's hospital, where we stayed for 5 days in the NICU. During this time they ran tests and were able to remove the blockage through enemas. After they eliminated all other possibilities for the MI they moved us to the pulmonary department and started treating him for cf. We were in the pulmonary department for another 5 days until the cf results came back and we had been appropriately trained on how to care for him. Since that, we have only been back for our doctor's appointments and my son is doing well (currently 5 months).
 
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