congenital heart defects/downs syndrome??Please help.

clairemum2 · Jan 11, 2009 6:30PM

Hi ladies im from the jan forum and have just had my world turned upside down.
My husband and i went for a late scan as have had some severe itching and when i was admitted lastnight the doc was concerned that i was measuring too far in advance at 41weeks when im 37+2.
We went in for the scan this evening and the sonographer was very quiet then she said she couldnt find babys tummy and was wondering why???So were we by this point as i could tell she was a little panicked!She asked us to sit outside and come back in 15mins which we did and she still couldnt get what she was looking for so she called in another sonographer and she couldnt get the scan either!
Then they started to mention babys heart and that it was on the wrong side of its body and they couldnt find its stomach the baby was breathing too fast and they were both looking a bit concerned by this time and DH and i were worried to say the least(no one was telling us just talking to each other!)
So we were sent back up to the day assessment unit with a letter and then a consultant peadiatrician came to see me,she explained that baby has got something wrong and they dont know to what extent as the scan would not show up certain things,she told us as much as she could about heart defects and then asked to see my downs tests which i didnt have as i wouldnt have done anything at the time if there was anything to be concerned about!
She also mentioned diaphragmatic hernia which is babys tummy is in the left side where the heart should be sitting and babys heart is on the right instead,with this condition it will be born and straight into theatre we are in turmoil because the fetal medical unit does not open after 5pm so we have to wait until tomorrow when the consultant will ring them and HOPEFULLY we will be seen tomorrow as i am so far along in my pregnancy but it is not a definate!!!I will be making sure it is definate!!So i just wanted to let it out somewhere and was wondering if anyone has been through anything similar as the doc couldnt even tell us if our baby will make it when born we are in limbo until we can see the fetal expert tomorrow.....

KirstyMacey · Jan 8, 2009 5:43PM

Sweetie i have no words that will be of any help or reassure you as i have no experience of it. I wish you and your baba all the best and hope they can tell you more 2moro (make sure you demand to see somebody the stress this is causing you is immenence and not good for you or the baby). It is obvious from what you have said that they really didnt have the correct songraphy equipment to tell you exactly what is happening so as hard as it is try to be calm until you know the full facts and be as positive as you can be.

Hope you have some support at home and i am thinking of you.

Sorry i couldnt be much help xx

karen130770 · Jan 9, 2009 5:46AM

So sorry to hear you having problems hon. Have you managed to get an appt for today?

Just a thought, but if no one on here has been in this situation, might be worth copying and pasting your message and posting it into Special Needs Children forum? Just thinking maybe someone in there has had a lo with heart problems possibly.

Wishing all three of you the best luck in the world.xx

em29 · Jan 9, 2009 3:18PM

Im really sorry that you ar having this awful stress so late on in your pregnancy. I really hope that you get some answers tomorrow and that its not too bad news. Goodluck and we are all here if you need to talk again x

clairemum2 · Jan 9, 2009 5:01PM

Have posted in jan forum but i wanted to tell you its a condition called congenital dyaprahgmatic hernia,my babys stomach and bowel is in the place where its heart should be and is pushing the heart over to the right the main problem though is the left lung as the specialist doesnt know how underdeveloped it is it is a life threatening illness and only has a 50% sucess rate but im trying very hard to stay positive for the outcome baby has got a heart scan on thursday next week and the following mon i meet with the neonatologist peadiatric to discuss ressucitation(HOPEFULLY)and then will be induced on the 21st january thank you for your concern girls it means a lot.xxxx.

karen130770 · Jan 9, 2009 6:18PM

Aw sweet, you must be so worried and it shouldn't be like this when you're due to give birth should it?

I have no words of wisdom, but I'm sending you big fat strong vibes for you and your lovely baby.xx

KirstyMacey · Jan 10, 2009 4:24PM

Glad you have more information hun and you are getting more help from the paeds at the hospital. I really do hope that everything goes well for you please update us on your baba's progress. Be strong sweet xx

ollier2001 · Jan 11, 2009 6:30PM

hi hon!!

sorry to hear that your little one has a diaphragmatic hernia, and has been given a 50% prognosis! i really hope lo will be in the happy 50%.

are you able to change your place of delivery to a unit that has an excellent record of success when the babe needs surgery? (you may already be at one which is fantastic!) - or one that has excellent SCBU / NICU facilities (these are usually called tertiary centres, and often located in the city's)

otherwise, i really hope it all goes well with the induction, and that your lo is born as healthy as poss!

thinking of you

xxxxxxx

congenital heart defects/downs syndrome??Please help.

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