Big Baby and Pleural Effussion - Chromosomal?

[born free]

Hi All

I am new to this forum and am from Sydney, Australia. I hope someone can help ...

It's hard to know where to start because until a week ago all was going to plan ... Please bear with me ... I am 32.5 weeks along.

After being really big and uncomfortable it was discovered I had excessive amnionic fluid (polyhydramnios). Baby too had some fluid in it's chest compressing a lung and pushing it's little heart to the right. We drained mine and the baby's fluid and thought at least now bub can develop his little lungs. Some fluid has returned and there already has been some improvement in the lung. The heart appears to be working fine despite it being on the right.

The doctor also says the baby is measuring big for the gestation. Again I thought just a big baby with fluid but the doctor is very concerned we have a chromosomal issue and bub may be severely disabled as a result.

I do not have gestational diabetes. All infection tests are clear. Ultrasounds do not point to there being any physical soft markers for a chromosomal issue. We have had the amnionic fluid tested and the major syndromes have also come back negative. The geneticist says they can't test everything and are convinced it is a syndrome.

So we may have an isolated big baby with fluid in it's chest or a baby with a rare and serious defect - we won't know for sure until birth.

We have been offered a termination which to me implies they are certain the outcome isn't good. I can't reconcile that and certainly have no intention of ending a pregnancy based on a hunch knowing there is a chance that the baby is just big with fluid.

I am not sure what I am asking here but all I know is that I can't breathe or function. This is our 3rd and I need to be there for my other littlies but I can't function.

We have been offered a test for Costello Syndrome however they still believe even if a negative result they'll think we have something else in that family that can't be tested. Geneticists can be wrong???

Anyone had something similar happen and what was your outcome?

Thank you in advance

 

[tummymummy]

I have no advice but just wanted to send you some big hugs and love. I cant imagine how your feeling right now but im here if you ever need a chat xxxxxxxxxxxxx

 

[born free]

I have no advice but just wanted to send you some big hugs and love. I cant imagine how your feeling right now but im here if you ever need a chat xxxxxxxxxxxxx

Thank you so much for replying and your support.

The waiting is the absolute worst. I have become a hermit as every time I'm out I am asked all the usual 'when are you due' types of questions. I just cry every single time.

I have another amnio next Tuesday and they'll test for Costello.

On a positive note we've met with a neo natal paediatrician and if the baby has no chromosomal issues the plural effusion should be easy to manage post birth.

We just have to keep praying ... x

 

[born free]

Just thought I'd close off this topic in case anyone comes across it in the future ...

Thank you so very much for taking the time out to respond to my post.

After a harrowing final 7 or so weeks of pregnancy I gave birth to a healthy baby boy.

As it turns out they had a few things wrong - baby was much smaller than estimated on the ultrasound and has no indicators for a serious (or not serious) syndrome.

The baby was induced at 37 weeks as it appeared there had been a stall in growth. The assumption was that there was a breakdown in placental function - understandable as it had 3 invasive procedures. Although when monitored baby wasn't in distress at all but the doctor decided it would be prudent to induce.

My waters were broken and meconium stained which added to the urgency ... after a long day baby finally joined us with a flurry of activity in the room. The first words my husband said was that he was pink and crying ... we both cried at that point. The doctors took over to check his breathing and after being prodded by several the conclusion was that he was in perfect health.

The lungs and heart were functioning normally so there was no indication of the hydrothorax - the in utero fluid drains and injection of picibinel worked. He was also checked by geneticists and although there appeared to be no syndrome evident they still wanted to monitor him and do more tests. After such an invasive start to his life I pushed back on any further testing as to us it made no difference (we would have if it was medically necessary).

He is now 4.5 months old and looking and behaving like a 'normal' baby. The geneticists too have conceeded there is no reason to monitor or see him again. The placenta was tested and that too came back normal. So the conclusion is he had hydrothorax for no known reason.

We are so blessed to have this little boy in our lives and still can't believe he is fine after all we were led to believe.

Thank you for all your supportive messages
x

 

[torch2010]

I am so pleased you have had a positive outcome. The same happened to us but the fluid was more extreme. Our little boy passed away at 25+5 weeks.

Enjoy your little man xx

 

[maxalias]

Wow! what a wonderful post, I am so happy for you!

 

[cupcake0406]

This is really lovely and it is so considerate of you to take the time to update your post in case others need info/reassurance in the future. Xx

 

[BrightLights]

Im really pleased you posted the outcome of your pregnancy! My daughter was a hydrops baby dangerous levels of fluid on her chest compressing her lungs from 20 weeks to 28 weeks it then went away it came back much worse at 36 weeks. She was born at 37 weeks and fought a chylothorax for 8 weeks in intensive care and is now a perfectly healthy 1 year old.

I'm pregnant with baby number 2 now and am hoping for the same miracle outcome as baby number 2 also has too much fluid floating around.

It's lovely to read the stories of positive outcomes!

 

[karolynca]

Great and thanks for sharing....I think Drs. now a days rely too much on technology, when I had my daughter I was told she was a big baby....her weight at 9 pounds...she was 7 pounds at the time of birth...Glad you took the decision not to terminate...CONGRATULATIONS ON YOUR BABY!