baby has a hole in the heart

mojoman

Just found out one of my grand-daughters is pregnant and her baby has a hole in the heart.It seems only one side of the heart is working, I'm not quite sure of all the details as everyone is so upset.She was told the baby could die just after birth,and now
they want to do tests for Downs and other abnormalities.Can anyone help with what to say to her or anybody gone through the same terrible thing? Please help!

meer53

mojoman wrote: »

Just found out one of my grand-daughters is pregnant and her baby has a hole in the heart.It seems only one side of the heart is working, I'm not quite sure of all the details as everyone is so upset.She was told the baby could die just after birth,and now
they want to do tests for Downs and other abnormalities.Can anyone help with what to say to her or anybody gone through the same terrible thing? Please help!

What awful news I've never been in your GD's situation but just wanted to say how sorry i am. It must be such a stressful time for you all. I don't really think anyone could tell you what to say to her, apart from that if she needs anything at all, you'll all be there for her. Her head will be whirling at the moment i would imagine.

I had lots of tests when i was pregnant with my daughter who is now 12. I had tests for Downs Syndrome and my result was extraordinarily high so i had extra tests which luckily confirmed that she was ok. The waiting for those results was the worst. I then had to have Amnioscentesis tests every month until she was born.

I do have a friend with a Downs syndrome child, she's 18 months old and did have to have an operation to repair 2 holes in her heart, everything went fine and she's the cutest, lovable little girl you could wish to meet.

I really hope everything is fine with your GD, people knock the NHS, but i have every faith in them, the people who looked after me and my friend are absolute stars.

CRANKY40

Is it left heart syndrome by any chance?

Upsidedown_Bear

You might find it helpful to read this:

http://www.bhf.org.uk/heart-health/conditions/congenital-heart-disease.aspx

My thoughts are with you all x

atrixblue.-MFR-.

my thoughts with you all.

im sure with carefull monitoring, and regular scans, and bloods i hope there a light at the end of the tunnel in this case.

a C section and immediate aftercare or surgery?

i dont know how they test for downs and other stuff, but if it puts extra stress or too much strain on mum and baby this should be avoided.

mojoman

CRANKY40 wrote: »

Is it left heart syndrome by any chance?

Sorry cranky40.Don't know what you mean.Not been back lately because a close family member died on Friday and things are all confused.She is having amniotencesis (hopefully this coming week)to test for different syndromes.She is now 22 weeks so they will have to hurry up to beat the 24 week cut-off point.Just praying that they will both be more or less alright. I thinknthat's what I mean

nearlyrich

Aw mojoman what a week you have had! Sorry for your loss and I really hope the news about the baby gets better with the results of the tests. Take care.

Torry_Quine

mojoman wrote: »

Sorry cranky40.Don't know what you mean.Not been back lately because a close family member died on Friday and things are all confused.She is having amniotencesis (hopefully this coming week)to test for different syndromes.She is now 22 weeks so they will have to hurry up to beat the 24 week cut-off point.Just praying that they will both be more or less alright. I thinknthat's what I mean

Presuming that by 24 weeks you mean the abortion time-limit you have nothing to worry about. If she were to want to have an abortion for handicap such as Downs then there is no time limit at all. Also be aware that amniocentisis can cause miscarriage.

JoJoB

Sorry to hear this news :-(

My niece was born with a hole in the heart and various other abnormalities (valves the wrong way round and arteries not going in to the right part etc). She had to be operated on when one day old at the Royal Brompton Heart Hospital, and basically lived there for the first 6 months of her life having various operations.

She is now a happy and healthy 10 year old.

Each case is different, but they really can do amazing things these days so don't lose hope.

purplegirl*13

I was born with a hole in my heart and operated on when I was just under 2 years, and in and out hospital until then. I'm now 33 years old. Other than regular check ups and getting out of breath faster than others when exercising, my childhood felt 'normal'. It is only now that it seems likely I may need an other operation in the next 5-10 years.

I just wanted to show that it can turn out okay, depite being born with a congenital heart disease.

My thoughts are with you x

mojoman

Many thanks to everyone who replied to my post and for all your best wishes.She is booked in for amniocentesis(I presume)and other tests on the day of our relatives funeral,but there will be no results until two day s later!!I will try to keep you all up to date.