Re: questions about intestinal blockage before birth

[Guest guest]

Sharon:

My son Ricky (who is now 7) was delivered at 33 weeks because of a

ruptured bowel seen in an ultrasound after he stopped moving and I was

put in the hospital. Before he was delivered, I was given a shot of

steroids to develop his lungs and he was on oxygen for a minimal amount

of time. I would strongly suggest that you talk to the CF doctor about

this yourself and ask him/her to call the perinatologist. Don't take

any chances.

Hope it all turns out okay, whatever happens!

Becky

> I have a two year old daughter with cf as well as a baby boy due in

> August. I am currently 31 weeks pregnant and the ultrasounds are

> showing blockage, calcifications and areas of large swelling in the

> intestines so we are obviously suspecting cf. The perinatal doctor

> who is doing routine ultrasounds is concerned about possible rupture

> of the intestines in-utero. She says even if they do rupture before

> delivery date they will not deliver since the main goal is to have

> the lungs well formed. It is difficult for us in that this doctor is

> not communicating with my daughter's cf doctors. I am the one calling

> around trying to figure out what all of this means and what should be

> done,if anything. Is there anyone else who has gone through similar

> circumstances with bowel obstruction/rupturing before birth?

>

> Sharon

[Guest guest]

Hi Sharon. First, congratulations on your pregnancy! I'm sorry to

hear your baby boy might have CF as well. Our daughter, Mikayla who

is 7 months - 5 months adjusted, was delivered early due to meconium

ileus. We found out she had CF from an amnio when I was ~20 weeks

pg. August 21st, 2002. I'll never forget the day. We have no CF

anywhere in either of our families and were absolutely rocked to the

core. You can relate. Anyway, I had ultrasounds done to watch her

bowels. They were normal in the beginning, but then began to show

dilitation, which led to more ultrasounds...two every week. The

blockage and dilitation kept growing and growing but noone really

talked about an early delivery. I am a nurse, not in this field but

I knew a little about what they were looking for. At 31 weeks we

asked what the threshold was where they would consider delivering

early and they told us a 2 cm dilitation. I think I was at 2.1 at

that point. Well, you'd think it was a no brainer at that point and

we couldn't figure out why the peri wasn't more aggresive so we

pushed. They told us that they prefered I get to 33 weeks. They

said I could get a steriod shot to help develop her lungs fast. Our

family friend is the Director of Neonatology at the Children's

Hospital we delivered at and facilitated a meeting between the peri,

the neo that would be rounding when we delivered and us. My husband

and I both thought it was weird that we were the ones to actually

make the call to deliver her early. The specialists just went a

long with what we wanted to do. I was terrified of her bowels

rupturing in utero. So that's what we did. She was delivered by c-

section at 33 weeks. She had a horrible blockage. They tried

gastro enemas to no avail. Mikayla had surgery the next day. The

surgeon said what she had was rare - meconium ileus with a segmental

volvulus. This means that the bowel was blocked and heavy from the

stool and flipped over on itself cutting off the blood supply to an

area of the bowel with turned necrotic and had to be removed. She

was in the NICU for a month and then home for a few days before she

developed asperation pneumonia and was hospitalized for another

month. She was home then a few weeks before her next admission due

to some virus crap going around. I won't lie, it was difficult

getting her launched and I think a lot of it had to do with the fact

that she was a premie, but looking back - I wouldn't change

anything. We felt that during the decision time of whether we

should deliver early or wait, no one wanted to make the decision,

which was frustrating and like I said, we just did it ourselves.

Have they told you what your son's dilitation is measuring? What is

their threshold for early delivery? Are you delivering in a

hospital with a level 1 NICU? Sorry for all the questions...

[Guest guest]

My now almost 5 year old son, had his intestines rupture before birth and it was

not fun. I went into the hospital to be checked out because he wasn't moving and

it was because of the intestines rupturing. He had emergency surgery at 4 hours

old and a colostomy bag for almost 5 months. Initially we were told he could be

in the NICU for a month. I would definitely check with your CF doctor about

this, it just doesn't seem right. We had no idea that my son had CF, so the

doctors were just following me routinely, they told me if they would have known,

I would have been followed much more closely to PREVENT the rupturing. The

meconium fluid was draining into his abdominal cavity making it difficult for

him to " breathe " in utero. I am really not trying to scare you, just telling

you what our situation was.

Kim

Mom to Jack-5 on 7/19!!

questions about intestinal blockage before birth

I have a two year old daughter with cf as well as a baby boy due in

August. I am currently 31 weeks pregnant and the ultrasounds are

showing blockage, calcifications and areas of large swelling in the

intestines so we are obviously suspecting cf. The perinatal doctor

who is doing routine ultrasounds is concerned about possible rupture

of the intestines in-utero. She says even if they do rupture before

delivery date they will not deliver since the main goal is to have

the lungs well formed. It is difficult for us in that this doctor is

not communicating with my daughter's cf doctors. I am the one calling

around trying to figure out what all of this means and what should be

done,if anything. Is there anyone else who has gone through similar

circumstances with bowel obstruction/rupturing before birth?

Sharon

[Guest guest]

Hi Sharon,

My son was born at 31 weeks screaming his head off with healthy

lungs. They gave me four steroid shots in 48 hours and that really

helped him. He was never on a vent or oxygen or anything.

My water had broken so that is why he was delivered early. The next

day they discovered the blockage in his intestines. He never had

surgery because they were to unblock him with enemas. Unfortunately

our neonatologist was not very informed about cf and we were told

that is was a long shot that the blockage was caused by cf. Zach

was diagnosed with cf at 13 months. He had a very difficult first

year of life because of the misdiagnosis. It was as if he had colic

all the time. The situation may seem quite scary being pregnant and

finding out there may be complications. Know that you have options

and can get a second opinion.

Good luck to you and your baby!

Sara- mommy to Zach 16 months

> I have a two year old daughter with cf as well as a baby boy due

in

> August. I am currently 31 weeks pregnant and the ultrasounds are

> showing blockage, calcifications and areas of large swelling in

the

> intestines so we are obviously suspecting cf. The perinatal doctor

> who is doing routine ultrasounds is concerned about possible

rupture

> of the intestines in-utero. She says even if they do rupture

before

> delivery date they will not deliver since the main goal is to have

> the lungs well formed. It is difficult for us in that this doctor

is

> not communicating with my daughter's cf doctors. I am the one

calling

> around trying to figure out what all of this means and what should

be

> done,if anything. Is there anyone else who has gone through

similar

> circumstances with bowel obstruction/rupturing before birth?

>

> Sharon