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Original poster

Aortic Stenosis / Hypoplastic Left Heart Syndrome at 20 weeks - any experiences?

239 replies

LittleMy34 · 28/01/2008 14:17

Hello all,

Have just had a foetal heart scan at 20 weeks following a high nuchal translucency measurement, and unfortunately they found that the baby has severe aortic stenosis - a narrowing of at least one and possibly two of the main arteries. They seem to think that it's fairly likely to lead to Hypoplastic Left Heart Syndrome by the time the baby is born, which is very severe and the baby would die within a few days without major surgery.
If we go ahead, the baby would need surgery within a day or two of birth, followed by two more ops before he reaches school age. the fist op carries a 30% mortality risk, the second two are less severe.

So now we're trying to decide what to do - which is proving a bit difficult, to say the least..... Neither option seems like the obvious thing to do.

anyone had this experience? how on earth did you go about making a decision?

any thoughts welcomed.

LittleMy

OP posts:
bundle · 08/02/2008 14:37

oh littlemy, lots of love to you. I'm so glad you have some special memories of Daniel, xxx

systemsaddict · 08/02/2008 14:48

Been thinking of you and your family all week LittleMy. Glad you are home safe and will always have special memories of Daniel.

sheila0 · 08/02/2008 15:00

Littlemy, glad to hear you are home now and that you have those special memories of Daniel which you will have forever.

andiemustlosehalfastonemore · 08/02/2008 15:11

Littlemy so glad you had some moments to treasure with Daniel lots of love to you and your family
andiexxxxx

debinaustria · 08/02/2008 17:08

Right, I can type now I've wiped away the tears! I'm so pleased that you had some special moments with Daniel ,I like the idea of leaving him with a present, take good care of yourself and your dp.

(((((hugs)))))

cali · 09/02/2008 18:41

Have been thinking of you all, glad you were able to spend time with Daniel and have those special times and memories to keep,
calixxx

ChinaSurprise · 11/02/2008 09:41

LittleMy
I'm so glad you have managed to find something positive in this awful situation, and you and your partner got to spend time with your beautiful son.
I wish you all the luck in the world and hope that you are able to move on, carrying Daniel in your heart always.
Lots of love and best wishes
xxxxx

Original poster
LittleMy34 · 11/02/2008 14:32

Thanks everyone - we are getting through each day at the moment, sometimes we feel fine and sometimes not! Daniel's cremation will be on Thursday and then we're going to try and go on holiday to give ourselves a break.

Thanks again for all your thoughts

LM x

OP posts:
NorthernLurker · 11/02/2008 14:35

Littlemy - was just thinking of you and looking for this thread! Am still praying for all of you - I'll do so especially on Thursday . A holiday sounds like a really good idea for you all.

marina · 11/02/2008 14:39

A holiday is a good idea, ours really helped. Dh and ds actually enjoyed quite a lot of it, I must admit I cried most of the time. But it was still a change of scene and I'm glad we went.
If you can arrange the sort of holiday where you barely need to make polite conversation with well-meaning strangers...we were loaned a little holiday chalet and it was perfect.
Will be thinking of you all on Thursday especially Daniel
Lots of love XXX

LondonBird · 11/02/2008 15:15

Hi LM

Just checking in and to say thinking about you lots.

A holiday could be good - we had one and whilst it was a bit like Marina's and I cried a lot and DH felt a bit better, it was good to get away from the day to day for a bit and have a bit of a bubble to start to try and heal in.

LB x

Original poster
LittleMy34 · 12/02/2008 20:58

Hello all,

just a short note to tell you all that we're still alive and well and in one piece. Very up and down emotionally, but we're booking a holiday tomorrow which I think will be a good break - even if I weep at least once a day!

Also wanted to post this poem which we're hoping the minister will read on Thursday at Daniel's cremation. Thought you might like to see it.

Hope you're all well

LM x

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep;
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.

OP posts:
marina · 12/02/2008 21:00

That is a lovely poem LittleMy. Thanks for posting it, I hope the Minister will read it for you. Good to hear you are keeping on keeping on. Each day is a little easier than the last, I found XXX

bundle · 12/02/2008 21:01

lovely words littlemy, xxx

blueshoes · 13/02/2008 08:17

Beautiful poem, LittleMy. You are very brave

debinaustria · 13/02/2008 08:22

It's a lovely poem, I hope all goes OK on Thursday for you.

Good idea to have a break - I'm sure it will do you all some good.

Deb

bundle · 13/02/2008 09:36

how are you today littlemy? I'm thinking of you as I watch the sun streaming in through the window

Original poster
LittleMy34 · 13/02/2008 13:39

It has been stunning weather all week, hasn't it? It has really helped us to deal with this better - we walk to nursery in the morning with Isaac and spot the squirrels in the park, and you just can't feel too depressed when the sun shines like that.

After the cremation tomorrow I'm going to go to the garden centre and buy the brightest spring bulbs I can find, and put some pots out in the garden. We also went to find a cherry tree to plant for Daniel, but they were all too big at the garden centre, so I'm on the hunt for a fruit tree nursery. It seemed ridiculous to buy a 4 foot tree for someone who only weighed 750g! We'd like something we can grow from quite small, it seems more appropriate.

So today is a good day, and our holiday is booked. I still have periods of weeping and feeling desperately sad, but I can see the light at the end of the tunnel.

LM x

OP posts:
NorthernLurker · 13/02/2008 14:00

Littlemy - I am in awe of your strength in dealing with your loss. Glad to read you have a holiday booked as well. The poem is lovely.
this looks like a good website if you are struggling to find a fruit tree I think that's a beautiful idea.

My girls and I were looking round an old church yesterday - they had candles there so I lit one for you and Daniel. Will be thinking of you all tomorrow.

Original poster
LittleMy34 · 13/02/2008 16:15

Thanks NL - I'll see what they have in terms of trees.

Only strong at some points, it has to be said - but thank you so much for your thoughts and I'm really touched at you lighting a candle for us. With all these positive thoughts coming our way, I know we'll be ok.

OP posts:
majormoo · 13/02/2008 19:52

Dear LittleMy I hope the cremation service goes as well as it can for you. That poem is lovely.
I really hope your holiday helps the healing process as well.

luvaduck · 14/02/2008 01:29

have been lurking on this thread and just wanted to say good luck for tomorrow, i'll be thinking of you.
you sound like an amazing, strong woman
x

debinaustria · 14/02/2008 06:23

You'll be in my thoughts today LM. Take care

Deb

libralady · 14/02/2008 08:39

Best of luck for today. I will be thinking of you. Hope everything goes well. Think the pem is great and I hope the minister reads it for you.
Take care
LLxx

NorthernLurker · 14/02/2008 10:40

Praying for you all today.