LEFT HEART - Development rate? Anyone with any ideas?

7 replies

warmmum · 04/12/2004 20:55

My SIL has baby with Hypoplastic Left Heart. Prognosis at birth was bad, but baby seems to be doing really well. He has had 2nd op. and is beginning to talk/walk etc. She is understandably very worried about his development - tantrums etc (he's 18mths). Does anyone know of similar case?

OP posts:

misdee · 04/12/2004 21:40

sorry no i dont. has she contatced support groups?

Santasluckylittlehelper · 04/12/2004 22:26

Hiya warmmum. I know of a couple of groups where there are mums of HLHS babes. Try here .

Where is your SIL based? I can probably give you a name of someone close by who can help by phone if she doesn't have internet access.

Original poster

warmmum · 04/12/2004 22:49

She's SE London. I know she is in touch with some support groups and families who have similar conditions. She has suffered being very blue with all the trama.

I think her ds is brilliant and doing incredibly well. She also does not know I'm chatting to you guys about it!

OP posts:

Santasluckylittlehelper · 04/12/2004 22:58

Its great that you're concerned warmmum. When is her ds due his 3rd stage?

My dd has heart problems and was a late developer, mainly due to the amount of time spent ventilated following her surgery and being tube fed to a year which affected her speech. I suffered myself with a sort of post traumatic stress, just as things were improving with dd, my mental state took a turn for the worse.

eidsvold · 04/12/2004 23:16

my dd1 was originally thought to have this when a heart defect was detected at 20 week scan. There are some brilliant websites with very positive stories - we did a search for info when they first suggested that diagnosis to us. It turned out our dd1 had something different and after two lots of surgery is doing very well. She also has down syndrome and so her development is affected by that although I do know that some medical professionals took off the time she spent in hospital to ascertain her developmental age in order to determine how she was doing.

Has she contacted the children's heart federation

info here

hth

Original poster

warmmum · 05/12/2004 20:04

He's due his third op in abt. 18mths or so. Santasluckylittlehelper - I think you are right that now the pressure is slightly off in terms of his health that poor SIL is finding it hard to deal with life. Frankly I'm not surprised I cannot imagine how hard this must be. After all even though he sailed thro' op 2 (in and out of hospital in record time) there is still the looming spectre of another visit to the hospital and the same terrifying worries.

The thing I find really hard is just not knowing what to say, because her ds seems to be doing really well (walking talking etc) but she feels strongly that he must be damaged by the ops etc. It is her first babe.

Situtation seems harder because I have 3 children, and am lucky because they are all healthy.

OP posts:

Santasluckylittlehelper · 05/12/2004 21:29

It is hard because life is sort of 'on hold' til that op is over. From my personal experience I couldn't quite believe that dd would be OK having come so close to losing her. And even though she met her milestones, if we disallowed the hospital time she wasn't that far behind, it took a long time to shake the dread that something would crop up. Added to which your SIL has all the usual first-time mum worries and its probably hard to differentiate between a normal worry and a 'heart' worry IYKWIM

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