Cardiac baby with absent left lung - help!

[darlomum]

Hi, I'm new here. I have a 3 month old who has congenital heart disease - total anomalous pulmonary venous connection. She was also born with only one lung! I have contacted the British Lung Foundation and they say that they don't know of any other people being born with one lung. Livy is well at the moment but I am desperate to find someone who knows what I'm going through, does anyone know of anyone?

I found this for you

I have not heard of this before but maybe this hospital has. They may be able to put you in contact with some support groups in the US and worldwide.

Welcome to mumsnet.

Hello and welcome!

Sorry I don't have any idea what you're going through (except in having a newborn ) but hopefully there will be a lot of support here for you.

It sounds quite rare but there will be other people here who know what it's like to be struggling with a rare didorder/condition.

xxx

this could help you too

oops- meant disorder

darlomum - hello. My dd has congenital heart disease, she's 15 now and doing OK although has had some deterioration recently. dd was diagnosed at 14 weeks following a collapse. It's a dreadful shock and I do know how you are feeling at the moment.

I don't know of anyone who has a child with one lung, although some have quite severe lung disease. The ds of someone I know had TAPVC and despite having a very rocky start is now doing really well.

I post on the message board at Heartline. You'd be more than welcome to join us There will be a contact in your area and the office may be able to find someone with a similar condition and put you in touch with them. Also the Childrens Heart Federation have a helpline.

It's good to hear that Livy is well at the moment - has she had a repair?

My ds was treated for congenital lobar emphysema at the Royal Brompton Hospital in London. I bet that one of the specialists there might have come across Livy's condition before

What a worry for you. My ds is a strapping great 12yo now who manages well with one and a bit lungs but I can remember the early days of worry and overwhelming tiredness very well. Do you have other children to look after too? Have you a network of baby-friends to lean on? I couldn't have managed without other people who treated my ds like he was normal when I felt he was so fragile. They were right.

Welcome darlomum. That's great that your daughter is well atm but this must be very scary for you. Is Livy your first child? I assume she will be having heart surgery in the future - there are quite a few posters on here with experience of that. Personally I have a daughter with a congenital heart defect. Dd2 has only a minor problem which has not required surgical treatment or impinged on her life so far so very differnt from you - but it was diagnosed when she was 6 weeks old and I found that experience utterly terrifying. I feel for you and hope you have lots and lots of good news.

Thanks to everyone who has replied. Livy is my second child, her big sister, Ella, died last year, she was 3 months and had chd too, although a different condition. Livy has had her repair, feeding is a problem but otherwise, she is doing well. I'm just so tired of feeling sad. We have moved away from my friends and family (husband's job) so am finding it a bit hard, but I will struggle on, and with a smile - for Livy's sake. NorthernLurker, you are the first person I have come across that also has had 2 heart children - do you have hh children too?

NorthenLurker, just re-read your post. sorry, I guess you have 2 hh girls! Time for bed I think!

Sorry darlomum - I've unintentionally misled you - I only have one child with a heart defect - dd2. I'm so sorry to hear about Ella. There is a thread here on the bereavement section for mums who have lost children and there are some great ladies there - will link for you.

Yes that's right.

this is the thread You can talk here about both your beautiful girls as well though.

welcome to MN darlomum, and I am sorry to hear of the loss of your dd Ella

many best wishes for the continued health of Livy

darlo- you have had a hard time. I really hope things get better from now on. Has Livy had an operation yet? What prognoses have you had?

Ella and Livy are beautiful names.

My BIL had an aortic repair at the Brompton this summer. All went well.

There is a poster called Eidsvold whose daughter had surgery for a heart defect after being born with Downs Syndrome and if you really scroll through the health section you will see quite a few other posters asking about this issue. CHDs are scarily common although the more serious ones are rare - if that makes any sense.

darlomum - so sorry about Ella. Please pop over to Heartline, we have several bereaved mums and a couple with more than one child with CHD.