Anyone with any experience of hypoglycaemic brain damage?

[vicsta]

Wonderful son is 9 weeks old now and after nearly dying from hypoglycaemia shortly after his birth, is doing remarkably well. Nobody knows what the future holds for our boy, so we feel a bit in limbo at the moment. Can anyone share their experiences (good & bad) to help us prepare? We are expecting epilepsy, physical and mental impairment and possibly blindness - such is the damage to his little brain, so please don't be wary of scaring me! All help gratefully received xx

hi upwind

I posted as ejb1976 earlier on on this thread

Am about if you want to chat

Stop reading up. Its terrifying and useless (I always do it tho ;)

Can really empathise with all the small and 'was she prem?' comments and questions. Think people mean well / are genuinely interested but it does come across as rude. Imagine commenting on what a big lump someone's 10 pounder is! I also hated the way it almost always invited you into sharing / going over raw traumatic story over and over Best advice there is you don't have to. I got the hang of it after few weeks and prob verged on the sarcastic when people said 'isn't she small' I'd go 'Oh dyou think so?' (when it was stating the blardy obvious )

My dd is still tiny now and we think we have found cause - a metabolic issue to do with glycogen synthesis

oh sorry and how could I forget - congratulations on the birth of yr dd

Thanks Pixiemason! It really does invite us to go over the raw details again and again. I went to a mother and baby group once and have never wanted to since after explaining 12 times why she is so very tiny.

People do mean well and I have to learn to brush off their questions. It will be funny to try "oh do you think so?" next time. She is about 7lb now at 9 weeks so their faces should be a picture

Hi Upwind, my DD completely different so nothing "useful" to add but wanted to say congratulations on your little girl. Enjoy the time when she's all small and cute and cuddly because before too long they're all BIG and cute and cuddly and you get backache!!

upwind - think 7lb at 9 weeks sounds pretty impressive for baby born with IUGR with birthweight of 28 week gestation. Take it from that she's feeding well? Does she / did she have ng tube?

Hi Upwind,
Just dropped in for a quick lurk after a crap day at work. Am not about much as I am a bit under the weather myself, but I'm glad I saw this today (Thank you for explaining Hairy ) as I wouldn't want to ignore you. I remember how hard it was having no information. Still haven't got much!

DS is still doing well and he is now 9 months old. It has been very much a case of 2 steps forward, 1 step back, but overall he has already exceeded many expectations. At 6 weeks they told us he would not smile or have any interaction with us or the world really, he would never crawl or walk or talk. What we had at 6 weeks was basically it. His pattern of brain damage meant that he had a 50% chance of epilepsy and 50% chance of blindness. He has suffered from infantile spasms (cleared now after numerous drug failures) and has epilepsy which, fingers crossed, seems to be under control at the moment. He has a severe visual impairment, but we are working very hard to stimulate that.
Now he is a great smiler and giggler, and an amazing flirt. He can hold his head up well and his control is getting better every day. He can weight bear which he loves, and he bounces in his jumparoo (see profile pics for evidence!). He is desperately trying to turn over and gets very frustrated as his motor skills are very delayed, yet he keeps trying (very proud mum emoticon). He has just started to sit up well with support, and can manage a few seconds unaided. He has only recently found the use of his hands after many months of encouragemnet by us, which is wonderful but a nightmare at medication time! He is also VERY vocal and can make a variety of sounds. He can eat lumpy food, but is not too fond of drinking out of a beaker/cup yet.

I have had some wonderful support, help and advice from everyone on this board, so I am glad you have found it. As frustrating as it is, nobody knows what the future holds for your DD (I still get very annoyed about it), it is a case of wait and see.

I second the advice of Pixie DO NOT GOOGLE - I've done loads and it means nothing. Also, throw away hide any developmental books. When I stopped looking at the milestones and realised that DS would do whatever he could whenever he was able, I was much happier!

We were also very lucky to have had physio from 10 weeks and OT and portage have just kicked in too. Make sure you are getting all the help you and DD are entitled to. I am very grateful for the fact that we have had a great deal of support from the NHS without too much hassle.

I am a bit unwell at the mo, so won't be around much, but if you want to e-mail me at any time, please do. Its vickyhowells1976atyahoodotcodotuk

Congratulations on the birth of your daughter, I'm sure that despite your concerns, worries and fears she will make you incredibly happy and very proud. I know my DS has. He started private nursery this week as I have returned to work. He loves it and they all love him as he is such a laid back, happy boy. He's been there 4 days now, and he has cried 3 times when I've picked him up, but only once when I dropped him off but .

Good Luck xxxx

Thabks all, especially feelingbetter ! It is so lovely to hear that your DS is doing so well. I am smiling away here after looking at those gorgeous photos on your profile. That smile could light up a room! I don't mean to hijack this thread but rather to join the ranks of the MNers on here with babies who had severe hypoglycaemia.

On the night she was born my DD couldn't be woken to feed and was very cold as well as unresponsive, her bm was measured at 1.3. A paediatrician has said that if they caught it on time there might not be lasting damage from the hypoglycaemia. Obviously the IUGR also puts her at increased risk of SN, but we don't really know anything and my DH is convinced she is NT. Her head appears disproportionately small, which is one of the reasons I am dreading the 8 week check and seeing where she is relative to the graphs. Our HV has weighed her regularly but taken no other measurements and she has not been back to the hospital since she was 4 weeks.

Pixie - my has indeed gained weight well and grown faster than expected, which maybe indicates that her IUGR was due to a problem with the placenta, although it looked okay. She did have an NG tube, but only for the first four or five days.

Ah she's doing grand, Upwind

Did they send the placenta off for testing?

Its wierd tho - don't think that much really is known about IUGR and often no answers come back. My bf's baby was born 2lb 13oz at 36 wks. Other than finding 2 vessels on the cord instead of 3 (which often happens and has no adverse effect), no explanation was given. FWIW, he does not have any issues as a result and has been signed off from the paediatrician at 18 mths

Hi there feelingbetter

Pixie, before the birth they assured me that her placenta would certainly be sent for testing (she was induced early due to the IUGR). But when I asked about it afterwards it had been disposed of "because it looked okay, though unusually small" With hindsight I do wish they had made me aware that an IUGR baby was at massively increased risk of hypoglycaemia and that I should be alert for any signs and also express colostrum for her.

But it seems churlish to moan given that I know how lucky we are to have DD. Her 8 wk check today was uneventful, not sure what I was expecting

I was induced as well cos of IUGR. Was 38 weeks

That's really bad placenta wasn't sent off. New histopathology guidelines advocate this as a matter of course in IUGR cases.

Am quite shocked also you wasn't advised / shown to express colostrum.

It isn't churlish to reflect on this at all - though probably more constructive at the mo to focus on yr amazing dd. So glad her 8 week check went ok

Hi, I know this thread is years old but trying to find some mums with DC who have gone through hyperinsulinism... Anyone out there? Could do with some help ;) xx