Possible Meconium Ileus update

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worriedgrandma

Guest
My daughters first baby was diagnosed 2 years with CF through newborn screening. She has the mutations F508/c.2657+2_2657+3insA. So far we've been very lucky and she has no symptoms at all. My daughter is now 7 months pregnant with her 2nd baby and an ultrasound showed a possible extended bowel which is leading the Drs to think she may have Meconium Ileus. They will do another ultrasound in 10 days to check again. If this baby is born with this blockage, how serious is this and what is involved in correcting it and will they have to deliver the baby early.


<span style="color: #ff0000;">My daughter had another ultrasound today and it showed definite bowel dialation, last time it was just a possible dialation so I assume this means its getting worse. She is only 30 weeks along. They are setting her up to see perinatal specialists.
 
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Ratatosk

Administrator
Staff member
Possible Meconium Ileus

She needs to make sure she has access to a hospital with a high level Nicu. We were fortunate that our local pediatric surgeon was on vacation, so the hospital flew our newborn to a children's hospital and he underwent surgery. His blockage was more serious, more involved and locally I'm not sure we would've had the same outcome. I did go into labor a couple weeks early, we had no idea about cf, so was a surprise. Ds spent a few weeks recovering and is a busy 9 year old today.
 
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LeighAnnNewton

Guest
Possible Meconium Ileus

My 17 year old son was born with meconium ileus. It was about a two week stay in the hospital. He had a colostomy for a few days, just to make sure his lower bowel was working properly. Once it was, they closed it. He does have Cystic Fibrosis, so intestinal symptoms are ongoing. But, he has not had intestinal surgery again. He has had 2 or 3 blockages which have been resolved by medications.
He came home for a week at 4 weeks old, then right back in. He had projectile vomiting and was severly anemic. After Nisen Fundiplication (not sure of sp.), a transfusion, and another 4 week stay, we went home.

He is now 5'9 and weighs 173!! He does great and is a college football prospect as a Punter.
Leigh Ann
-mother of 17 yo Brett w/CF, deltaF508, and 19 yo Dylan, w/o CF
 
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worriedgrandma

Guest
Possible Meconium Ileus

How serious is the surgery. It it a surgery to be very very worried about or is a more routine surgery. I always thought bowel surgeries wern't good with a high risk of complications. We just want to be prepared on what to expect.
 
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sdelorenzo

Guest
Possible Meconium Ileus

It is possible to avoid the surgery with enemas that clear the bowels. That is if it is determined that the intestines are
not twisted, etc. My first was born with cf and my second child showed signs of meconium illeus on ultrasounds. We met with a surgeon while I was pregnant. This surgeon was called in after my son's birth. My son had daily enemas until day 10. He was schedule for surgery on day 10 but his bowels had cleared that day! So he didn't have to have the surgery. Yes, find the best children's hospital with a CF center. That is important to have the baby at a children's hospital where the radiologists, etc are familiar with infants and similar situations.
Sharon, mom of Sophie-10, Jack- 8 both with Cf and Grant-3, Paige-1 both without CF
 
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schmj4910

New member
Possible Meconium Ileus

The surgery is very serious and can be very complicated. One thing to remember is that the surgeon will be performing a difficult surgery on a tiny baby, which makes it even more difficult. You could probably Google "meconium ileus surgery" to find out more. Here is a good link to some of the complications associated with meconium ileus: http://emedicine.medscape.com/article/939603-overview .

Most children go on to lead normal lives after the surgery, but it might be helpful to learn about some of the possible outcomes, such as short gut, failure to thrive, g-tubes, bacterial overgrowth of the small intestine, chronic constipation, and chronic diarrhea.

Our son had a complicated meconium ileus and was hospitalized for the first three months of his life, returned home for 10 days, and then readmitted for one month.
 
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worriedgrandma

Guest
Possible Meconium Ileus

Is it possible for what thdy think they're seeing on the ultrasound to be gone by the birth
 
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shannon28

New member
Possible Meconium Ileus

Any surgery is serious business, and an abdominal surgery in a newborn is definitely scary. Be informed about possible outcomes like a previous poster said, but try not to get too hung up on them. It is possible for the blockages to clear on there own. I believe that's more likely when it's lower in the bowels, someone correct me if I'm wrong.
My son's blockage was found when I was 30 weeks, and I delivered at 35 weeks because it appeared to be getting worse. He had surgery that day and a follow up at 2 weeks to clear scar tissue and clear out the rest of his digestive track. His was a complicated case and we were in the NICU for a month. My advice would be to meet with a surgeon beforehand, have a plan just in case and hope for the best. Good luck to your daughter and grandchild.
 
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worriedgrandma

Guest
Possible Meconium Ileus

thank you everyone for your replies. Most of it isn't what I wanted to hear, but at least it's best to be prepared. Thank you.
 
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DaraR

Guest
Possible Meconium Ileus

Both of my kids had MI. My oldest had surgery after 3 days of enemas. He was in the NICU from the beginning. The surgery was a piece of cake with no complications. Recovery after the surgery can be tricky on the babies. My oldest had an ostomy for 6 weeks followed by another surgery to put the intestines back down. He is doing great. My daughter had MI as well and had surgery after 4 days of enemas. She was in the NICU from the beginning as well. She did not need an ostomy and is also doing very well. You should be prepared for the worse and get in contact with a Level 3 or 4 NICU for delivery, preferably at the care center where your other granddaughter is currently being seen. Having the CF team involved from the beginning will be a huge blessing and they can help the general surgeons with the MI as many haven't dealth with it being so rare. Your daughter should also be closely monitored as my little girls dilated bowel perferated at the end of my 36 weeks. I was induced immediately. We would not have caught that if I wasn't getting weekly U/S.
Good luck and try to stay proactive. It will benefit your daughter to have all her ducks in the row before your daughter is born. Also, I know at least three other CF moms who kids had dilated loops in U/S and had no sign of blockage after the baby was born. So there is lots of hope!!!
 
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JennyCoulon

New member
Possible Meconium Ileus

It is serious but don't get all worked up for nothing. My first was born with M.I., 6 weeks early. He had surgery 4 hours after c-section delivery to relieve it. They took a portion of dead bowel out and he had a colostomy for about 1 month to allow it to heal before they reconnected his bowel. He then had to learn how to process formula, etc. My second son they saw the whitening of the bowel on the ultrasound which is a good indication of CF and possible blockage. I had a ultrasound and they showed "stuff" floating in the amniotic fluid so they did a amniocentesis (sp)? and figured out that it was meconiumso the obstructionresolved onit's own.Our middle child who is 7, does have CF andboth my oldest who is now 12 live normal lives. Myoldest had abowel obstruction on his 1st birthday and hasn't had any problems since then.My third childhadnothing out of the ordinary and shedoesn't haveCF. I would make sure she is giving birth at a hospital that has a NICU so they will be at the same place. Just pray and all will prevail. Good luck and keep us in the loop.
 
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worriedgrandma

Guest
My daughter now has an appt next week to meet with a whole team of specialists. They told her to plan on being there all day. Thats a lot of people they have her meeting with. I'm am so worried. She's only 31 weeks pregnant. I just don't know how we're supposed to get through this weekend waiting to hear what they're going to say. I'm also concerned about why did they get her in so fast to see the specialists. Does that mean they think its really bad or are they just being prepared.
Just to add, her first daughter who has CF is fine. No symptoms and she is also pancreatic sufficient and not on enzymes. Only takes nebulizer treatments daily.
 
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Ratatosk

Administrator
Staff member
IMO, best to be prepared and it's good that they're taking this VERY seriously.

With DS, we didn't have a clue beforehand and he ended up being lifeflighted 250 miles to a children's hospital in the City. The surgeon mentioned afterwards how complicated the surgery was as there were a number of issues he had to deal with. We're pretty sure if we'd stayed at our local hospital that the outcome could've been VERY grim.
 
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CJPsMom

New member
I commend you on getting more information and trying to be more informed.
We went through meconium ileus as well, with surgery 2 days after birth, ileostomy for 2 months, reattachment surgery and doing well now. The surgery can have complications and it is on a newborn and it's very scary, but it's a relatively quick procedure and medical technology & advancements have lessened (not eliminated) the possibilities of the really scary complications.
One thing I would offer though, is to remember that your child/in-law need you to be strong. If you are all panicky, that is not helpful for them. I know it's hard and I know you're worried, but as the parent of the child going through this and having just gone through delivery (and we had no idea this was going to happen), I needed someone to be strong, to not add to an already incredibly high anxiety level and to not be someone/something else that needed to be taken care of/managed.
I only say this because I'm reading a tremendous amount of anxiety in your notes - come share it here anytime - but be strong for your child/in-law - they need that from you.
Praying for your child & grandchild!
 
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shannon28

New member
It sounds like they are ensuring they are prepared. Does she have someone to go with her to the appt? It's a whole lot of info they throw you, and I wish we would have taken notes.

CJPsmom has great advice. I couldn't have my mom around because her anxiety level ratcheted mine up so much. I'll be keeping your family in my thoughts.
 
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Ratatosk

Administrator
Staff member
CKPsMom and shannon28 have some great advice. My MIL is a nursing instructor and I was more comfortable having her there than my own mother. My dad flew in; however, I specifically asked that my mom not come as she would have added to our stress.

DS didn't have to have an ostomy. In fact despite a lengthy complicated surgery, they were pretty sure DS was going to be able to go home a week after the surgery; however, he'd gotten an infection, spiked a fever and we spent a couple extra week in the NICU on IV antibiotics. We used that time to learn how to do CPT, nebs, enzymes, so by the time we got home we seemed to have a bit of a handle on thing.
 
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worriedgrandma

Guest
CJPsMom, you are absolutely right, you do sense a lot of anxiety in me. I am scared to death for the baby but I try very hard not to let it show around my daughter. She is stressed out enough without me adding to it. Shannon, yes her husband will be going with her next week to the appt. It's on Tuesday. I'm hoping we will know more after the appt. They will do another ultrasoound that is more detailed than the ultrasound she had last week. We are just in a very small town so the equipment isn't as high tech. They are going to a University/teaching hospital in a large city which has a Childrens Hospital too. Thank you everyone for all your support and I will post on Tuesday what the Drs had to say.
 
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CJPsMom

New member
Hang in there - there is life after MI. Our little one is 19 months old now and for people who don't know us, they have no idea he's ever had any issues!
And I also caution about being panicky because my mother-in-law is very panicky and at one point, she didn't listen well when she was bedside with our little one in the NICU. Surgeon said his bowel could die, MIL heard "die" and freaked out. Called all the family, told them the surgeon said he could die, and on and on. Meanwhile, we had NO idea she had heard this. She's a complete mess, we're trying to keep her going and by the time our little one went in for surgery we had a gaggle of people with us because she called everyone.
So, that's why I caution about the anxiety level! I can laugh about it now, but it was NOT funny at the time - nor was it helpful. I found myself very frustrated several times when it seemed like I was comforting her instead of her comforting us.
 
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