19 weeks u/s shows problems with one twin

Previously, twin-b has always been one week behind twin-a....now, twin-b at 19 weeks or actually at 17.5 weeks in growth
is showing 3 possible abnormalities: ambiguous genitalia/mild ventriculormegaly/5th percentile of short long-bones.

They gave us preliminary chromosome tests this morning which came back normal, but as per the geneticist this doesn't
mean the baby is developing normally. With any of the above anomalies isolated, there wouldn't be much of a concern,
if any, but with all 3 there is more concern. At this far along we only have a few days left to consider a 'selective
reduction' but with no hard evidence supporting a poor prognosis, it's difficult to make that kind of decision.

We're frustrated with the uncertainty regarding the health of baby-b....the latest feedback from the geneticist was that
the baby could come out almost perferctly normal to extremely cognitively impaired to stillborn. No real probability of
outcomes was provided.

It's been quite the roller coaster emotionally for our first unexpected, twin pregnancy. Anyone with feedback, prayers, or just support
is most appreciated.

thx!

 

:hug99: I'm sorry that you have this news and the stress of it all. :hug99: My two both had two markers for downs and they are both 100% okay. I wish I had some answers for you or could help you with all of this, but I can't. Just know I'm sending :hug99:'s and prayers your way.

 

You and your babies are in my thoughts and prayers :hug99:

 

This must be tough to go through. It's hard to know what will happen in the future. Don't know what to tell you, but :hug99: Hope someone can give you more advice.

 

:hug99: I am so sorry to that you had to get such news. :hug99: Is it possible to get a second opinion? I will keep you and your babies in my thoughts. I wish you the best of luck! :hug99:

 

This must be an extremely challenging and difficult time for you. I am so sorry. I will keep you in my thoughts. :hug99:

 

I understand where your at being faced with such a decision. We were given a grim possible prognosis and had to make that same decision .. but we decided against it and went through with the pregnancy and as you can see from my av it turned out to be the best choice. My ds Jayden (twin b) was born with a heart defect but other than that is perfectly normal and happy. It hasnt been easy but well worth it.
Now I know not every story has a happy ending .. I just wanted to give you some positive feedback.

Good luck with your decision .. I'll keep you in my thoughts !

 

I know how scary it is to get some bad news from an u/s. I just got some myself. I just wanted to let you know my thoughts and prayers are with you. Please keep us updated.

 

I am sorry you are going through this. I don't know anything about it, but wanted to let you know that I will keep you in my prayers.

 

we now have another two weeks to possibly consider a 'selective reduction' which could be done in ny. we are in nc. the ny facility could
do it up til 22 weeks.

after much emotional stress and back and forth, we are pretty much decided to trust in nature and let it run its course.

with the preliminary chromosome check coming back normal and there just not being any specific pinpointed diagnosis or prognosis
for a poor outcome, it's personally just too iffy to take that kind of action...

at this point, we even will see about possibly avoiding future u/s's unless really necessary medically in which measures could be taken/
acted upon if certain things found...we go back 9/2 for a follow-up and we would hope that the ventricularmegolae remains the same at
the mild measurement or diminishes, and that the ambiguous genitalia distinguishes itself a bit...but, maybe after that we can not go back
til much later....<sigh>

thanks to everyone for the kind thoughts, words, and prayers! as you all will be in ours, thanks for keeping us in your prayers and
positive energies!

 

:hug99: to you. We were in the same situation as you were just about 2 weeks ago when we were told one of our babies appeared to be anencephalic, but we were referred to a speciliast and it was ruled out. I suggest getting a 2nd opinion and don't give up hope. I will pray that God will point you in the right direction.

 

I beleive you are completely doing the right thing. I will be thinking and praying for a good outcome.

 

I absolutely believe you are doing the right thing. Without certain proof, it would weigh heavy on your heart if you did chose the reduction. I will keep you and your LO's in my thoughts :hug99:

 

I really believe you are doing the right thing, no matter what happens. I will pray for you!

 

we were told that baby b was smaller (within reason), had a 2 vessel cord wich may result in a heart defect, and a dangling choroid (which could lead to hydrocephaly) i chose to ignore what they said and in the end the dangling choroid resolved itself and we had two healthy girls. though it was nice to be monitored so closely sometimes ignorance is bliss and too much information is not a good thing.

 

You're in my thoughts and prayers!

 

Hi,

I am so sorry to hear about your baby. We are going through an experience kind of similar to yours. We are 32 weeks right now. At our 19 week u/s, they found a number of issues with one of our babies including; hydrocephalus, hole in heart, short limbs, and a couple of abnormalities with her umbilical cord. They told us that all of these issues may indicate an overlying chromosomal abnormality. They offered us an amniocentesis, which we decided against. In hindsight, I kind of wish that we would have gotten the amniocentesis performed at 19 weeks (that is a long story). They have found a few other abnormalities since the 19 week u/s. The doctor that we have now thinks there is a 40% chance our baby has a chromosomal abnormality; and if our baby does have a chromosomal abnomality is likely to be trisomy 13 or 18, which are lethal in most cases.

Was the "preliminary chromosome check" that you discussed in your posting an amniocentesis? I am so not very knowledgeable in fetal medicine, but I am kind of surprised that you were offered selective reduction without more testing. We have been through a couple of echocardiograms, an MRI, and have seen numerous specialists. I totally understand you not wanting more ultrasounds. We have had about 12 throughout our pregnancy so far. I hate it when they think they find something new. And, there is nothing that can be done in-utero with the issues they have found anyway. However, I do have to say that I am glad to be a little more prepared for what may happen after birth. We have actually transferred service from our obgyn to another in Houston (which is about 2 hours away). We have some specialists working with us and our new obgyn, and the facilities are more advanced in Houston. I feel more comfortable delivering there.

My husband and I have never been through a medical trial like this, and we are often curious how well our doctors are handling our case. I would love to chat with you some more. I would also like to continue praying for both of your babies and you guys. With so much unknown, I know that God is the one constant that has helped us go through this.

Annie

 

I'm so sorry you are going through this. Fear for your child's health is one of the most difficult things. I don't have any advice but wanted to send you a hug and our prayers. :hug99:

 

Many prayers for you and your babies. Please keep us posted!

 

Thanks again to everyone for the kind words and thoughts...

Yes, the preliminary results I referred to was in reference to an amniocentesis. The full results may be back next week I suppose. The fact that they did offer the reduction as an option did concern us a lot, of course. I think because of the 3 "markers" the option is talked about. I've heard that some people will terminate upon a 25% chance of abnormalities in a baby...I'm not meaning to judge, but now that I find myself in these shoes, I couldn't imagine making that kind of decision based on that probability. In any event, it IS a relief for the two of us to be on the same page and not going back and forth with research and thoughts...we will be anxious going into the 9/2 u/s ,however.

I'm glad you have found some comfort in your planning and decision making regarding the facilities in houston. I would be happy to chat more about these tribulations as well. You and yours will be in our prayers as well. Time to get back to joyously embracing our pregnancies and preparing to bring our little wonders into the world, huh, Annie? I know we will still be nervous going forward, but let's look at it this way: everything happens for a reason and life doesn't throw more at us than we can handle.

~eric

QUOTE(KeithandAnnie @ Aug 17 2008, 09:22 PM) [snapback]934634[/snapback]
Hi,

I am so sorry to hear about your baby. We are going through an experience kind of similar to yours. We are 32 weeks right now. At our 19 week u/s, they found a number of issues with one of our babies including; hydrocephalus, hole in heart, short limbs, and a couple of abnormalities with her umbilical cord. They told us that all of these issues may indicate an overlying chromosomal abnormality. They offered us an amniocentesis, which we decided against. In hindsight, I kind of wish that we would have gotten the amniocentesis performed at 19 weeks (that is a long story). They have found a few other abnormalities since the 19 week u/s. The doctor that we have now thinks there is a 40% chance our baby has a chromosomal abnormality; and if our baby does have a chromosomal abnomality is likely to be trisomy 13 or 18, which are lethal in most cases.

Was the "preliminary chromosome check" that you discussed in your posting an amniocentesis? I am so not very knowledgeable in fetal medicine, but I am kind of surprised that you were offered selective reduction without more testing. We have been through a couple of echocardiograms, an MRI, and have seen numerous specialists. I totally understand you not wanting more ultrasounds. We have had about 12 throughout our pregnancy so far. I hate it when they think they find something new. And, there is nothing that can be done in-utero with the issues they have found anyway. However, I do have to say that I am glad to be a little more prepared for what may happen after birth. We have actually transferred service from our obgyn to another in Houston (which is about 2 hours away). We have some specialists working with us and our new obgyn, and the facilities are more advanced in Houston. I feel more comfortable delivering there.

My husband and I have never been through a medical trial like this, and we are often curious how well our doctors are handling our case. I would love to chat with you some more. I would also like to continue praying for both of your babies and you guys. With so much unknown, I know that God is the one constant that has helped us go through this.

Annie

 

I'm so sorry you are having to deal with the uncertainty. My sister recently went through something similar with her unborn baby girl. They discovered she had an extra chromosome so further testing had to be done to find out what they were up against - normal to mentally and physically disabled . Luckily they were able to tell her with more tests that the baby is fine. Is there any chance they can give you more answers? Just wanted to send huge hugs and prayers to you! I know how scared and nervous she was.

 

Unfortunately, after further consultation with a head of a neonatal program we have chosen to go with the option of
selective reduction. This will be at past 20 weeks so we have to go to NY for it. It has been a very difficult process,
but our understanding now is fairly clear about the prognosis of baby-b. It's just been hard because with good
heart-beats and movement and fluids...it was hard to really process what was being told to us initially after the 19-week
u/s. I kept hearing that 'it could be that the baby-b comes out pretty much normal'....but, further consultation has
pretty much cleared up that with the 3 significant markers being the way they are; the problem appears to be more
'fetal' in nature than 'environmental' so...there could be significant hormonal and other cognitive and other issues involved.

Overall, we're okay with this decision as now we know more concretely what we're really looking at. Sounds like there's
still an 85+% chance of a successful twin-a pregnancy after the reduction. The not really knowing and the concern and
worry about the 'what ifs' and this and that was really tough.

Well, we'll be trying to make arrangements on Monday to see about a mid-week procedure.

 

:hug99: You are in my thoughts. I'm sure this wasn't an easy decision. :hug99:

 

I am so sorry to hear about the prognosis and the difficult decision that you had to make. I understand how difficult it is to deal with the uncertainty of everything. I will continue to think of and pray for you guys as you progress through your pregnancy.

Annie

 

I am just curious...because unfortunately we didn't get one done...what were the results of your amniocentesis?

Again, my thoughts and prayers are with you guys as you go through all of this and the rest of your pregnancy.

Annie

 

I will send every good thought and prayer I can muster your way. We're praying so hard your babies are ok.

The Johnson-Peddie family

 

yeah, part of the difficulty, Annie, was that the full chromosomal results came back normal as well. but this was somewhat
expected due to our screening early on for genetic abnormalities. The blood checks and such looked fine. Because the babies
can be compared as far as long-bone/limb size and genitalia concerns go, there is more reason to strongly suspect a significant
fetal problem with b.

sorry for your concerns and you'll be in our prayers as well. thanks for everyones' kind thoughts and prayers. we will keep
you posted as things develop and it's nice to have an outlet and support.

QUOTE(KeithandAnnie @ Aug 24 2008, 03:02 AM) [snapback]944779[/snapback]
I am just curious...because unfortunately we didn't get one done...what were the results of your amniocentesis?

Again, my thoughts and prayers are with you guys as you go through all of this and the rest of your pregnancy.

Annie

 

:hug99: to you. How scary and stressful! Sorry that you are going through this; what a painful decision to have to make. Sending prayers on your behalf that all goes as well as possible.

 

(Delete; sorry, double post.)

 

I am so sorry that you are faced with such a difficult decision. How far is it to go to NY to have the procedure done? I know you mentioned in your pp post about possible genetic abnormalities, but did they ever tell you exactly what is wrong with the baby? Did you seek out a second opinion to make sure that there is in fact a problem? It seems like a big decision to make just based on suspicion that something might be wrong. I hope the best for you and your babies. Keep us posted.

 

QUOTE(carytwins @ Aug 23 2008, 09:55 PM) [snapback]944600[/snapback]
Unfortunately, after further consultation with a head of a neonatal program we have chosen to go with the option of
selective reduction. This will be at past 20 weeks so we have to go to NY for it. It has been a very difficult process,
but our understanding now is fairly clear about the prognosis of baby-b. It's just been hard because with good
heart-beats and movement and fluids...it was hard to really process what was being told to us initially after the 19-week
u/s. I kept hearing that 'it could be that the baby-b comes out pretty much normal'....but, further consultation has
pretty much cleared up that with the 3 significant markers being the way they are; the problem appears to be more
'fetal' in nature than 'environmental' so...there could be significant hormonal and other cognitive and other issues involved.

Overall, we're okay with this decision as now we know more concretely what we're really looking at. Sounds like there's
still an 85+% chance of a successful twin-a pregnancy after the reduction. The not really knowing and the concern and
worry about the 'what ifs' and this and that was really tough.

Well, we'll be trying to make arrangements on Monday to see about a mid-week procedure.

I am sorry you have to go through this. I had a top Maternal Fetal Dr (specialized in U/S diagnostics too but has since moved to Ireland) in NY when I was diagnosed with my momo twins. Which dr are you going to?

 

We had to travel from NC to NY for the procedure. Dr. Evans is who we worked with.

It's done and now we've lost baby-b but so far baby-a is still looking healthy and viable.

We are very grateful we did get a 2nd opinion last friday night, which convinced us to move
forward with this selective reduction today. Because today the u/s confirmed that one of
the 3 markers (ventricularmegalae) actually worsened significantly over only the past two
weeks. It seems most definite that there was a serious obstruction going on and this baby
would've suffered significant cognitive impairment; perhaps other issues as well. It was still
emotional and difficult, but we are comfortable with our decision and extremely grateful for
everyone that helped us along the way. Mostly grateful for our little baby who is 21+ weeks
along and looking good. We'll have a follow-up u/s to see how he still looks on 9/2.

 

:hug99: to you...

 

Please give your baby a chance. The doctors tried to hint that we may need to lose one, but they are doing so well now. I will pray for you and your little ones. I'm sorry you have to deal with something like this!

 

update.

A week after the selective reduction we had a follow-up (22wk) u/s for our remaining baby today. He's looking good
and healthy and normal. We are at peace and comfortable with our decision. We are very excited and happy
and looking forward to the rest of the pregnancy and bringing this little beautiful baby into the world.