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Children's health

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Original poster

Feel like my world is falling apart!

23 replies

Louisajane27 · 19/02/2014 14:30

I'm not sure if I'm posting in the right section but didn't no where else to post! Sorry! I'll try to keep this short.

I'm 34+3 weeks pregnant with my second. At 28 weeks I went for a routine growth scan due to having gestational diabetes. They found at the scan that babies head was very small and I was sent for lots of scans, blood tests and MRI.

At 32 weeks I was told that the tests showed that the baby had a stroke which had perminantly damaged his brain. We were told that he would have moderate to severe learning difficulties as well as problems with movement. We were told that he is also likely to develop epilepsy and cerebral palsy.

Just as we were getting our heads round this we have had a devestating morning at the hospital! They did more scans with specialists this morning and discovered more things. They have now discovered that his heart is very enlarged and struggling. Also his growth has slowed right down. They have told us that they believe all this things are due to a rare metabolic disorder, that can not be treated. They have told us that he is unlikely to live for long and may never come home.

I don't know how to think or feel! I'm sad and shocked by this all, sorry again for the long post and if it's in the wrong place. I just really need to talk/share. X

OP posts:

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PoorOldCat · 19/02/2014 14:33

Hi Louisa

I'm so sorry to read this. Your poor baby, and I can't begin to imagine how you are feeling having had this news.

There will be other women here who have been very much where you are now.

Stay around, I am not much help but just wanted to express my sympathy

stillenacht · 19/02/2014 14:39

Oh Louisa how devastating xxxx I have no practical advice other than I have a severely learning disabled son. Life is and has been a continuous struggle but he is loved by everyone as your child is and will be. Much love from me xxxx

Original poster

Louisajane27 · 19/02/2014 14:42

Thank you, I can't get my head round this! My head is all over the place, will I ever feel normal again? I know that's a stupid question but I just can't think about anything at the moment. X x

OP posts:

PoorOldCat · 19/02/2014 14:46

Yes, love you will feel normal again. It might take a while but you will.

HyvaPaiva · 19/02/2014 14:48

Louisa

minmooch · 19/02/2014 14:49

Hello op. I'm sorry to read your devastating news. 5 years ago I was pg with identical twin girls. They suffered TTTS and we lost them both inutero but for a time we battled with the knowledge that the smalles twin had suffered some brain damage but we did not know to what extent.

You will be in shock and grief - grieving for the normal pregnancy and baby you thought you were going to get. I have no advice as to where you go from here but you will find the strength from deep within to cope with what you have ahead of you.

I'm sure you will have an opportunity to discuss your options with your consultant and however you proceed will be done with love and compassion.

ProfPlumSpeaking · 19/02/2014 14:51

Poor you

Yes, you will feel normal again one day but you are bound to have huge sadness to get through first

I wish you all the best with the next few weeks xx

stillenacht · 19/02/2014 14:52

For me I've never felt normal, as I did before, again but I've adapted and changed as we all do when our world comes crashing down. Oh Louisa I wish I could be more help. I didn't know in utero that my boy would be as he is but you do find a way to deal with things. Are you getting good support in RL?xxx

spiderlight · 19/02/2014 14:56

No practical advice, sorry - just wanted to give your hand a squeeze and say that I'm thinking of you and your little boy

ajandjjmum · 19/02/2014 14:59

I am so sorry that you're going through this. Different situation with my DS, but I can remember wondering if I would ever feel happy again - I am - but thinking of you and your family.

Oly4 · 19/02/2014 14:59

Just wanted to send love and hugs. Am sure the consultant has given you options. Only you and your partner can decide on a way forward. Poor you and your little boy, am so sorry xxx

Original poster

Louisajane27 · 19/02/2014 15:06

Thank you everyone for your support. The hospital/consultants were really kind and caring today. The plan for the moment is to have a c section in 3 weeks time at around 37 week. He will then go straight to neonatal unit for help and observation. Then it's really just wait and see, I'm praying he will be strong enough to come home even if it's just for a while. X x

OP posts:

Dilidali · 19/02/2014 15:13

Hand holding here.
I have no words, but I am here.

Twighlightsparkle · 19/02/2014 17:06

Oh goodness, I really feel for you.

Five years ago we were told at my 20 week scan that our baby had various brain abnormalities and advised not to continue with the pregnancy.

We progressed, my child now 5 and a half. All I can say is keep positive and talk to your friends and family and let them be there for you.

beautifulgirls · 19/02/2014 19:41

Sorry to hear of the news you have been given. Please do come across to the Special needs children section and post over there as there will be others around who will have had similar experience. There is plenty of ongoing support over there and great advice in general.

Original poster

Louisajane27 · 19/02/2014 19:53

Thank you again everyone, it's nice not to feel alone.

Beautifulgirls, thank you I posted about his stroke but having updated yet. Think I will do that now, thank you. X

OP posts:

cestlavielife · 21/02/2014 16:20

hi louisa, it's too early to say for sure what problems your child will have long term - take each day as it comes.

the good thing is they will beready when he is born and you can prepare for the fact he may ahve to go into neonatal care.

there is lots of support out there including here on the special needs forum .

dont worry too much about long term right now - focus on tehf act you will have a little baby who will need you; get as much support as you can; find out about practical things like long term parking at the hospital, keeping yourself fed and watered, etc. one day at a time.

some metabolic disorders can be treated - but they wont be able to test until he is born, most likely.

Original poster

Louisajane27 · 23/02/2014 15:47

Hi, thank you for your help and advice. I'm feeling better now I have had a few days to process things. Like you said I'm just taking things one day at a time. I'm trying my best to stay positive and focus on him coming home and not the negative scenarios and what ifs. Thank you again for all your help. X

OP posts:

mymatemax · 23/02/2014 19:27

HI Louisajane, so sorry that you have had such news. Have you arranged to have a look around the SCBU, It can be really helpful if the surroundings are more familiar. Take care x

Original poster

Louisajane27 · 23/02/2014 19:34

Hi, no I didn't know I could do that! I'm seeing my mw this week so I'll ask her about arranging a visit. Thank you x

OP posts:

Uwaibi777 · 23/02/2014 21:07

Louisa I am a Christian and in your situation I want to offer my prayers and support I will be lifting you and your family up in prayer.... I pray that God will comfort you and be your strength and sometimes the Dr's are not always 100% accurate put your trust & faith in God xxxxxx

Original poster

Louisajane27 · 23/02/2014 22:27

Thank you very much, that's really kind. X

OP posts:

MummyNic7 · 24/02/2014 23:18

Your in my thoughts & prayers always xxx

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