Question for parents who knew baby had CF prior to birth

[anonymous]

If you found out when you were pregnant that your baby had CF could you please tell me what specialist you saw, i.e ob/gyn, perinatologist. Also if anything ever showed up on u/s such as echogenic bowel or if there was ever any dilation of the bowel noted and if your labor was induced early, or if you delivered via planned c/section. Did the baby need surgery after birth or an enema to clear blockage.

Hate to be nosey but this would help me sooooooooooooooo much.

 

[jenniferp]

sorry, that was me, thought i was logged in.

 

[Diana]

I don't have too much info for you but thought I would see if anything about my pregnancy would help.

When I was pregnant with Elisha (2nd child) I knew there was a risk of CF but I didn't want to find out early so I waited for the birth for the testing to be done. The obstetrician didn't mention any concerns about what method of childbirth would be referrable just in case she had CF and there were no signs of an echogenic bowel.

Sorry if this is not the info you were looking for, my prganancies weren't complicated except for Elisha being breech. I had a c/section for that reason and hated every minute of it.

 

[Jane]

Hi Jen,

My second son was diagnosed through amnio at about 16 weeks. Since my first son has cf, we wanted to be prepared and have a diagnosis before the birth. We did some ultrasounds late (I think it was about 32 weeks) but everything was ok. My kids never had any bowel problems or cf- related issues at birth, but we had to have a pediatrician present at the birth just in case.

Dee- Both of my kids were born c-section because of breech positions. I really didn't mind the c-section too much (I even chose the second one).

 

[ashton2005]

Hello, we found out at about 25 weeks pregnant from the routine blood work that i was a carrier, then i elected to have my husband tested and we found out that he was a carrier also so they sent us from our obgyn to a maternal fetal medicine doctor nd they did routine u/s on us and i elected to have an amnio and i also changed the place that ashton was born due to wanting at least a level 3 NICU. if you have any questions you can email me ccarder@indy.rr.com

christi
ashton 4 1/2 months w/ cf
abbi 5yo without

 

[ashton2005]

oh yea our us also started showing echogenic bowel due to obstruction

 

[anonymous]

We didn't know until about 12 hours after DS was born; however, there were some signs. When my water broke, the amniotic fluid was greenish, so the doctor assumed that DS has stooled in the womb. So a team of NICU people were there to suction him out -- he had a ton of green gunk. Doctors looked him over, the thought he was fine. They assumed it because green amniotic fluid is usually caused by stooling prior to birth.

Wasn't until several hours later when he started hurling and they did xrays did they determine he had a bowel obstruction. Had to have surgery the next morning. I wish I'd known ahead of time; however, because it happened when it did, DS was flown to one of the best children's hospitals in the nation and it just happened to have an accredited CF center. So every thing happened for a reason. He could've ended up undergoing surgery at a local hospital, possibly having to have an illeostomy and we wouldn't have learned everything about CPT, medications ,etc from the CF team. The local cf clinic doesn't do cpt until there are symptoms.

Liza

 

[Lurking4now]

There is not much I can add to what has already been said.
 Just thought I'd share that it sounds like we might be pretty
much in the same place.  I am 26 weeks pregnant with our
second child and we are both carriers of CF.  We had an extra
u/s and we will get another one around 30 weeks, but that will be
pretty much it due to our insurance.  We elected not to do the
amnio but will get the baby tested at birth. My OBGYN said
that right now there is not really reason to change our birth plan
unless something changes.  If we do see an echogenic bowel, we
will go to a hospital with a level 3 NICU.  But, we are also
having a planned c-section due to a previous breech birth and some
of my own health issues.  It sounds as if you may have seen
something on the u/s? I wish you all the best... 

 

[Jane]

Liza,

Wow, my water was also green/brown when it broke and the doctors assumed it was just a stool too. They did call a pediatrician to be at the birth and check my son after his birth but he was very healthy. Nothing ever came of it afterwards.
I've never heard of anyone else having this and I never thought it was cf related.

Wow again, I learn something new every day here.

Jane

 

[anonymous]

A coworkers grandaughter stooled in the womb -- noncfer. First time I'd ever heard about it happening. She was over due, long labor and it sometimes happens. Cleaned her up and she was perfectly fine. Happened again to a guy I work with -- same thing, although in that case he aspirated and developed pneumonia and almost died from an infection. Also a noncfer.

So I didn't think anything of it at the time and was shocked when the neonatologist on call mentioned CF 12 hours later. DS spent several hours in NICU under observation, was examined by two doctors. So it was a total shock.

Liza

 

[anonymous]

Lurking4now-
Thanks for your response.
My son is six months old, I was followed by a general practicioner during my pregnancy, we discovered my son had CF when I was 16 weeks pregnant via amnio, they also noticed echogenic bowel, which eventually turned into a dilating bowel.
I just feel there was a lot more they could have/should have done, I believe any other doctor would have made a better decision than what he did.
I did see a specialist, they monitored him w/ u/s frequently. His bowel continued to dilate and at 38 weeks it was at 2.6 cm, which is big for an infant. Nobody did anything, they just sat on it and waited, insisting I must be 39 weeks for an "elective induction", they didn't feel a c/section was neccessary.
My son went into distress the night before the planned induction, I went to our local ER (does not have NICU) and his heart rate was between 180-200 bpm, scored a 2 on the biophysical profile, only reason he got a two is because there was enough amniotic fluid in the sack, he would have had a 0 other than that. They delivered him four hours later via c/section, he was resusitated and transported to a hospital with a NICU two hours away.
His bowel had ruptured in utero, he was taken to surgery.....long story after that, but he has severe brain damage.
I have been doing lots of research because I feel all of my doctors fell below the standard of care.
So, I'd just really love to hear from people that had similar situations, I want to know how most doctors would have reacted had they seen this serious condition continueing to worsen. Or any situation where the doctors did an early induction for a CF baby.
I can't figure out why they were so against delivering him at 38 weeks when they realized this problem was getting worse daily. They did L2 u/s and knew he was a very large baby. He weighed 11 lbs and 2 ozs at birth, I can't believe they really wanted me to go through labor???? I believe my baby was just too big to handle this huge blockage, and what normally happens to CF babies after birth if they are not treated for MI, happened to him early because of his size. But, I dont' know. And can't seem to find many answers.
Thank you all for reading, anything helps.
Jen

 

[anonymous]

When I went into labor, I was at 36 weeks and I kept calling the doctor saying I was pretty sure I was in labor and should come in. I was told it was too soon, that I couldn't be in labor 'cuz this was my first child. I had this (TMI) brownish green discharge and my contractions were consistly 4-5 minutes apart the night before. I had gone to the doctor the day before and was told everything was okay and I hadn't even begun dialating. Finally I'd had enough and had my doctor take me to the hospital, I was checked and told I was staying -- that I was going to have the baby that night. He was 7 pounds when he was born.

Later when he underwent surgery for the blockage, I was told it might take him longer to recover because he had a volvus - -the connection to his esphagas had been stretched to the max, so the had to shrink that down, he had twisting, that had cut off some of the blood supply to his intestines so they had to remove some necrotizing (dead) bowel, and while undergoing surgery a portion had burst. We were soooo fortunate that the neonatologist had picked up on this and realized the local hospital wasn't equipped to handle this type of surgery -- the peds surgeon was out of town and the regular surgeon bowed out. DS spent 6 weeks in the NICU recovering from his surgery, actually he was fine after two weeks, but developed a nasty bug and had to have iv antibiotics for 14 days.

Liza

 

[Lurking4now]

Wow...thanks for sharing your story.  Is there any chance you
were supposed to deliver at a catholic hospital?  When my doc
and I talked about it, I asked about the timing of my c-section.
 He said that because I have to deliver at a catholic
hospital, they absolutely will not do a csection before 39 weeks
minimum unless MY life is in danger.  Insurance is also the
reason I am not automatically going to a different hospital with a
NICU, too, though.  Its all very strange to me...some guy in a
suit who's never had the sniffles, much less had medical training
is going to be the person who decides how and where my baby will be
born and treated based on how much money he can squeeze outta
me...seriously, strange system we have here...<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Lurking4now-
That is a strange situation. I wonder if they are prepared to face a lawsuit if anything should happen to go wrong before during or after birth???? I think they will find it very difficult to explain to a jury of twelve citizens that they couldn't induce labor because there was nothing wrong with you, regardless to the fact the baby may have been in extreme stress.
I recently spoke with my attorney about the so called "policy" of not doing an induction prior to 39 weeks, and he guaranteed me no such policy exists ANYWHERE, he said a policy like that is extremely risky for a hospital due to the <u>many</u> different factors that determine wheter labor should be induced.

Are you saying that your insurance will not allow you to see a specialist??? If so you should consider changing your insurance company. What will happen if your child does have CF and has to have surgery after birth, as so many do??? Will they pay???

So far my son's medical bills are over $300,000 dollars! He has at least five different specialist he sees routinely.

I do hope everything goes well for you and your baby, but don't back down from ANYONE if you feel your not getting the care you deserve, you do have rights. If I could do one thing different I would have fought harder for my son, I was his only advocate and sometimes I feel like I failed him, that is very hard to live with.
Jen

 

[anonymous]

I was just curious to the parents that have kids with CF - Is there anything new out there to do so we don't have another child with CF? Except artificial insemination (I suppose). I really haven't looked into or asked about it - but was just curious. I consider myself lucky that my first child was healthy - because at least we have 2 kids. Sometimes I do think that I wouldn't mind having another one. My 9 yr old boy does pretty good with cf - but I'm just afraid for the future. I was also wondering if you talk about cf with your child alot or not. We don't cause I'm afraid he would dwell on it and worry about it. He did ask me one day if he was going to die before us - that about killed me!

Mother of 9 yr old boy wcf

 

[Lurking4now]

Jen,<br>
To be honest we are both so new to this situation, my husband and I
didn't know what to ask.  I guess because there is no
echogenic bowel (at least on the u/s) that they don't feel the baby
is at risk (since we decided not to do the amnio, there isn't even
a CF diagnosis yet).  You've brought up good points, though.
 I do know that there is at least one good CF accredited
center that my insurance is accepted by, though.  Once my (3
yo) son/daughter (nb) is diagnosed, its supposed to be much
easier.  I SOO wish we could switch insurance.  My dh and
I work at the same place though and they only provide one insurance
plan.  I wish I could just afford to get private insurance
thats not through my work.  Thanks for everything to think
about though.  <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
<br>
Anonymous:<br>
CF is genetic, so there is no treatment that would prevent a child
from getting it.  From a kids point of view, I remember having
medical/emotional issues that my parents didn't really talk about
it.  They didn't want me to dwell on it or feel bad.  The
thing is, it was all a part of my daily life, and not talking about
it just made me feel more lonely.  I wasn't dwelling, but it
would have been helpful to have someone that I felt like I could
relate to.  That's just my opinion though.

 

[anonymous]

there is something called Pregenetic Implantation Diagnosis (PGD). It's done as part of in-vitro. If you and your partner are both carriers, there's a 25% chance that any other children you have will have CF. What they do is test the embryos before they're implanted. I know of a couple of people who have had this done and have had it covered under their insurance.

To the person who is pregnant with a child with CF -- we were fortunate that our child was transferred out of network to a children's hospital with a high level NICU. At the time we were upset about being so far from home, but I'm not so sure DS's outcome would've been the same if this hadn't happened. We ended up getting a referral after the fact and quite frankly even if we hadn't gotten one -- when the bills started rolling in -- the costs weren't all that bad. The biggy was all the transportation related costs -- air ambulance, regular ambulance -- those were considered non-covered until we got the referral. Otherwise a couple hundred dollars here and there --- total cost for a 4 week nicu stay and surgery prior to insurance kicking in --- $169,000. IMO, please get a second opinion. We didn't know how serious DS's condition was until after he was recovering from surgery. Things very well could've gone very very badly. The cost of a second opinion is nominal when you consider the alternatives.

Liza

 

[JazzysMom]

I delivered at a catholic hospital (St. Vincents in Manhatten, NY) & I had a c section 4 weeks early! I dont believe that line. It doesnt even make a lot of sense to me. There must be more that he isnt telling!

 

[julie]

Anonymous about preventing another child from having CF, I have some info on my website, <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</a> about PGD and IVF. Maybe this will give you some of the information you are looking for!!!

My husband and I just recently went through IVF but NOT PGD because we personally didn't need it (he has CF and male infertility factor). If you have any IVF questions for me, I am happy to answer them! <a target=_blank class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>

Sorry to venture off the topic a bit,

Hope everything is going well for you Jen!! I really hope you get all the info you need. I'd love to hear from you whenever you have time to email <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

We did not know for sure our son had CF until after his birth, but we were pretty much told it was very likely. Saw echogenic bowel at 20 week ultrasound, sent for carrier testing, care was taken over by perinatologist, ultrasounds every 2 weeks, delivery scheduled at university hosp with best children's hospital in state, induced at 39 weeks, tried multiple enemas, needed surgery and an illeotomy.