Pregnancy question- didn't want to post on PG- and RANT

A good friend of mine just called. She is 12 weeks and just had her 12 week scan.

Took them 1 year on IVF to get PG.

So she was told that the baby has an umphalaceal. Or rather, the baby DEF has some of its intestines growing outside of the body.

The doctor said its either an umphalaceal or partial molar pregnancy whee the baby has a third set of chromosomes.

1. Does anyone have any insite or experience with either?

2. Any advice?

3. I'm doing good with her. She confided in me. She is the kind of person that wants the truth and nothing sugar coded. She wants real. So she can turn to me to reLly talk about all options once she has another scan and tests.

4. Her SIL, thinking it would help, said "well, at least you know you can get pregnant..."

5. My rant. Her f'ing DOCTOR said "we'll. go home and google both". What is wrong with this doctor?????

Any advice Nyone can give me would be appreciated. Weather you went through it or know about it.

Thanks!

Re: Pregnancy question- didn't want to post on PG- and RANT

My cousins daughter was just born with this....her intestines outside the body. I don't know about the chromosome thing though and in her case it was not a molar twin.
They did take the baby very early, but she was OK. They waited a while and then she ahd surgery and they put them back in and she is a perfectly happy and normal 9 month old baby girl now. No lasting ill effects. She is a little behind on her milestones bc of her adjusted age and bc she spent a lot of time not being able to move around and having surgery. However, she is in OT and is expected to completely catch up eventually.

Message edited 1/20/2014 9:41:02 PM.

Pregnancy question- didn't want to post on PG- and RANT

My DH's nephew was born with his intestines outside. I think it's called gastroskesis (sp?). My SIL was 16 and pregnant and they told her to terminate. She ended up giving birth full term vaginally and her son is now 19 and healthy as a horse. He was in the hospital for a few weeks after he was born so they could put the intestines back in and he could recoup. Other than being on special formula as a baby he has no complications and no digestive issues.

Sending prayers for your friend. People tend to be so insensitive with their comments.

Re: Pregnancy question- didn't want to post on PG- and RANT

I'd go to a high risk OB.
That person would be the best to speak to.
There are varying degrees of Omphalocele & it is often associated with other issues.

Re: Pregnancy question- didn't want to post on PG- and RANT

Pregnancy question- didn't want to post on PG- and RANT

For an omphalocele, the outcome depends on the size. Small one are closed surgically after birth, but the baby will be in the hospital for a long time.

For really large ones, the lungs do not grow properly and that can cause long term problems. Also omphalocele is also associated with other birth defects and some genetic disorders, but it's not 100%.

I have no input on the partial molar pregnancy thing, but if it is an omphalocele, it would suggest she meets with people who see this often. Chop in philly deals with a lot, ny Presbyterian childrens hospital. This is something she wants to see a real expert for as it's fairly rare

Message edited 1/20/2014 9:56:37 PM.

Pregnancy question- didn't want to post on PG- and RANT

Ok. I really appreciate it. I have a friend who works at CHOP.

My girl friend, lets call her Missy, is having one more scan this Friday. They are hoping the scan will give them more informTion at that point.

The chromosome thing is incompatible with life. If it is that there is no question they will end the pregnancy.

And the doctor would not give them any good words. She didn't say "this is bad", but when missy asked for ANYTHINGpositive they could at least hang their hat on, the doctor said for the second time "I,m concerned".

She also told me that this doctor was a high risk doc. I'm going to speak with my chop friend and see what she says. If chop friend says "come" I am sending missy to chop.

Thanks everyone. Any more anyone wants to add I appreciate. And again because of the nature of this I did NOT want to post on PG.

Re: Pregnancy question- didn't want to post on PG- and RANT

Bumping for daytime group.

Re: Pregnancy question- didn't want to post on PG- and RANT

Not me, but a very good friend of mine. I didn't meet them till her DD was 2 and doing much better. It was 2 years of hell for them. She lived at the McDonald House by CHOP for almost a year. She didn't have her DD around too many children, had a feeding tube and breathing machine at night.
She had a C-section so they took her and brought her straight to NICU
Now at 4 you'd never know! She is a spitfire in gymnastics, plays so well and we get together for several playdates. She did have to get feeding therapy bc she was fed through a tube for a couple of years. Even getting her to eat is tough, but my DS is bad as well and didn't have those issues.

They just had a 2nd DD who is perfectly fine. I know they were so afraid.

Re: Pregnancy question- didn't want to post on PG- and RANT

What Dr. TELLS you to google?? Most Dr's told me to stop googling. Definitely tell her to see a high risk! I highly recommend Dr. Kofinas if she can see him.

Re: Pregnancy question- didn't want to post on PG- and RANT

Re: Pregnancy question- didn't want to post on PG- and RANT

Re: Pregnancy question- didn't want to post on PG- and RANT

She should see Dr. Kofinas in Garden City. He is one of the best perinatologists and he has equipment that no one else has. He does in utero surgeries too.

Message edited 1/21/2014 7:42:36 PM.

Pregnancy question- didn't want to post on PG- and RANT

I had a partial molar pregnancy and saw dr. Kofinas. He is amazing.