Here are some suggested organisations that offer expert advice on SN.
Baby received Brain Damage at birth(56 Posts)
Has anyone been through something like this?
I had my DD 3 weeks ago today and she was born with the cord tightly round her neck, she didnt breath for a long time and suffered a hit to the central brain.
She has been suffering seizures and has only started to wake up slightly from the sedation.
MRI suggests Cerebal palsy.
We are preparing to take her home and she will be tube fed for the time being, she seems to be recovering her gag reflex, can swallow and we have been given a little dummy for her to learn to suck properly, she can such but doesnt seem to know why she would want to IYKWIM
I'm sure you'll find help here, I can relate to some of your experience. Firstly, you must be feeling terrible shock and upset. Give yourself lots of time to adjust to things, hopefully your dd will start to settle down with feeding soon.
My ds is 9yo now, but when he was born he had seizures and was rushed to scbu after a bad birth experience. Yes, it turned out to be CP but no-one can ever say the severity of the CP at such a tender age. Don't let any doctor try to tell you the future for your dd, it's impossible to say.
I hope you are getting lots of support from family/friends, health visitor etc. How are you coping?
I'm sure there will be words of wisdom here soon.
Thank you ....IM possibly coping a bit too well....taken it as a slap in the face but something I must just get on with.
Getting lost of support so far especically looking after my other 2 dc's.
We had a phonecall in the middle of the night to say she was back in ICU after a huge seizure.
Im keeping an open mind re the doctors...her consultant has openly said he wouldnt like to have to see himself!!!
not got any direct personal experience (DS's SN didn't become apparent till he was 3), but just wanted to say congratulations on your baby, and sorry to hear it's such a stressful time for you all. I hope you can get to take her home soon, and sorry to hear about the seizaure, and hope she gets back out of ICU soon.
I don't have any experience but didn't want to leave your thread without posting.
I hope you are able to bring dd home asap. xx
josey - my dd2 was exactly the same. she was born at term with hr of 28 and no first gasp for 8 1/2 minutes... ventilated and taken to SCBU - neonatal fitting and you know the rest. no suck/gag reflex, ng tube fed. (they also managed to break her clavicle as well as the cord being round her neck, as they were in such a hurry to get her out...)(she's also dc3 - the others were 21 months and nearly 4) she was discharged from SCBU at five weeks.
dd2's suck reflex did develop slowly, and i won't tell you she was easy to feed, but she did learn, and we ditched the ng tube at about 6 weeks... with ongoing feeding issues... i did have to get really scary with the SCBU staff at one point, as they were not even testing her suck with the dummy, they were just using the ng as it was easier... it got a bit better after that...
i'm not going to give you the full story but feel free to ask q's - as all our littlies are very very different in their development, but dd2 has been an absolute star all the way and astounded everyone. she was originally dx with spastic quad cp as her muscle tone was v tight, but her tone has changed over time to very loose, with fluctuations, so her dx now is athetoid cp.
she is 4 now, and we are very very proud of all that she has achieved after such a difficult start.
'special kids in the uk' is also a good site. lots of parents of littlies with cp and other issues, and v friendly.
i wish you the very best whilst you go through this enormously difficult time - and lots of healing thoughts for your daughter. you are still in shock and it does take a while for the 'coping mechanism' to relax and allow you to express it a little. thinking of you...
we did. it was a long time ago(dd now 13)
dd has cp. just wanted to tell you that there is light at the end of the tunnel. it is just a different tunnel.
Hi Josey, congratulations on your baby.
My dd1 was in SCBU nearly 4 months, born at 27 weeks and had a massive brain haemorrhage. She has CP, epilepsy and hydrocephalus.
We found great help from various charities and their websites when we left the NNU, SCOPE being one of them. Also Hemihelp when it became apparent that the CP was majorly on one side of dd's body.
The MRI will give an indication of the area of injury, but we were always told 'time will tell' developmentally. I have no specific experience of the sucking issues, altho dd was NG fed for many months, after the long line and TPN stopped.
I will be thinking of you.
Thank you for sharing your stories and thank you for the congratulations, its nice to be congratulated.
Her consultant is keen for her to get home for possitive stimulation, this time last week she was still incubated and on 02. Then a really nice MW took time to work with her and in 48hours she was in a cot off the o2 and off her monitor.
They are stressing to get her feeds up to 4hrly and as she is a big girl its alot of milk, she was sick quite a bit yesterday and I think that may have been the cause of the seizure, cause of course she spewed the meds. I fed her sitting up and burped her today and suprise suprise she wasnt sick.
The docs didnt give her life 3 weeks ago, then they said she wouldnt gag/suck/cough or move unless she had a seizure. She is however doing all these things.(rude finger sign to them) They think they will be spastic quad, along with other things. I have to say I find the broken English hard to deal with along with the medical terms.
The Physio came to see her today and is a lovely possitive woman to speak to which is nice after all the doom and gloom.
The thing I find hard is I dont know what to ask because we dont know whats what. I have an Aunt that has an OBE for her work with disabled children, she doesnt live near us but will be help, but again I dont even know what to ask her. I feel as though I have become very stupid if that makes sense.
Apart from TIME is there anything I should be asking or need to know?
Congraulations on your DD, I hope you get the support that you need.
In NE Scotland, have been told about 3month follow up....she is already under a good Neurologist(sp) Physio has seen us 3 times already and if doesnt see us before we leave will phone us in a few weeks....have met with the feeding specialist and she is giving us a tour of the sick kids hospital tomorrow...have met with the community development woman. I havent seen the speach thearapist though it was her that issued the dummy she has seen dd. I think they are planning getting more involved when she turns 2 mnths.
My own MW is still helping and the HV is very good, I have asked for speciallised First Aid training.
When she has a seizure she seems to peddle her legs though last nights it was arms legs sucking and eye rolling. I have seen her having twitchy leg movements. She is very settled when cuddled, sometimes holds your finger sometimes bats it away, she opens her eyes to our voices.
Im doing ok, I need to get her home to let my body recover I think, I have quiet tears of sadness and guilt, I had her at home as I labour very quickly her head wasnt engaged when waters broken and she was born 2.5hrs later so they think that is what was the problem. No matter how hard to try and listen that its not my fault I still have the guilt. I had PND after DC1 so i suspect im being secretly watched!! I just love my baby and want to look after her at home....as much as there are fantastic MWs helping her yesterday we went in she was stinking/coverd in sick and had poo on her clothes
the feeling of guilt is normal. I remember it so well. but it won't have been your fault.
so glad to hear you are getting help and support. the first few months are very hard as you will be greiving.
I wish I lived near you.
It sounds like your dd is getting the care she needs. Our physio didn't get involved until my ds was 7 months old, even though he was in SCBU when newborn and they knew he had brain damage. It's good news when the professionals are ready to work with you and your dd. And to show you around the hospital too. It all sounds very positive from that side of things.
Just to bear in mind that once you get home from the hospital, that's when your emotions may get the better of you. Just to warn you really. It's very normal to expect that to happen, as you are "cushioned" in hospital a bit. (Well, I felt that way anyway).
Please stay in touch on MN and let us know how your dd and you are doing.
And congratulations too.
dd2 was born in Paisley - we were discharged from hospital with a full team (physio and speech and language feeding specialist, and an invitation to the local sn baby group care of an health visitor)... dd2 was 9lbs, and she looked like such a fraud next to all the prems, wedged into her box...
you have already discovered that one really good professional can make the world of difference to outcome - so keep that in your head as you move forwards as unfortunately it will be up to you to make sure you find them and keep them! don't worry about not knowing enough/ having any experience, none of us did, but your learning curve will be huge - in no time you'll be the one telling the doc, and you'll suddenly realise that you will always know more about your daughter than they ever will - and you'll be back on here advising other mums.
no-one knows what your dd will be capable of - we were told much the same as you, and dd now walks, talks (ok not quite like everyone else, but close enough...) and i still can't believe how far she has come.
the first year was honestly the absolute hardest, but after that i started to take more control of the situation.
remember to take time for yourself and your other dcs too - it's very easy to be completely subsumed - remember it's ok to be just a little bit selfish - you have to look after yourself or you can't look after the rest of them!
if it helps, i'm still convinced in the back of my head that skiing at 14 weeks was the cause of dd's cp (with the doc's permission lol!) it's not - clearly the mri shows birth hypoxia, but it doesn't stop me feeling as though it is my fault - you have to let it go, it's one of those things, and move on.
sending you strength x
Congratulations on your new daughter
My DD2 is 4 yrs 4 months. She was born at 34 weeks after I had a placental abruption causing probable brain damage. She doesn't have CP but they found out at 4 weeks she also has a rare genetic disorder. She spent 6 weeks in NICU and came home with an NG tube, oxygen, apnoea monitors and shedloads of medication.
We were very lucky, we had a lot of support in the form of the neonatal community nurses (sisters from NICU who rotated doing a placement in the community). They visited daily after DD2s discharge, then tailed off to weekly. They were incredibly helpful. We also had feeding support from SALT, as well as (over time, not straight away) OT, physio, Portage, and plenty of consultants from various specialities.
It was still bloody hard work but so rewarding seeing her improve. Even tiny, seemingly insignificant achievements made us cry and cheer and want to throw a party! The day she sat up at nearly one year old we broke out the champagne
My advice would be:
Take any help and support offered, even if you don't really want it at that time take it and then you can dictate when you do want it.
Cry, weep, wail and don't feel bad when you have a down day (or week). They will pass and your child will amaze you.
It seems a long way off but I found her first birthday incredibly hard, and actually became quite depressed. Remember to seek help if you get depressed. Noone will judge you. It's bloody hard work being mum to a disabled child.
Take each day at a time
Post on Mumsnet for support!!!
Congratulations - I hope you can take your DD home soon so you can get on with the joy of getting to know and love each other.
Our circumstances were different as my DD (3.8yrs) contracted encephalitis at 2 wks. A month later she had a very ugly MRI with pretty dire predictions. I didn't even really understand what CP was when they gave us the prognosis. She can't sit independently, walk or talk but is sweet, loving, infuriatingly stubborn and funny....
We were lucky to get some great advice early -
MRI's are an indication but not an accurate predictor of disability (my daughter should be doing far less than she is).
Enjoy your baby - in the end she's like every other baby who needs the full love and care of parents.
You will go through the stages of grief - more than once. I still do although it seems to be getting easier. Birthdays can be very hard so we go out of our way to make it a pampering day for ourselves as well as DD.
As her parents you will be the most effective advocate for your DD - take charge of her medical/therapy needs and don't be afraid to question or challenge decisions made be drs/therapists. Research as much as you can so you go into appointments informed.
The one thing I really hated was people telling me how brave I was, although I was always too polite to challenge them for being so patronising.
There are plenty of alternative therapies available - some very expensive - use your own judgement and knowledge of your child to decide whether to try them. We've found hydrotherapy and conductive education to be the most useful, although when she was younger we also used cranial osteopathy and accupressure with great result.
I have found that other parents are the most valuable source of information....Mumsnet and specialkidsintheuk are great.
You're not alone
Josey congratulations on your dd, things are hard now but it will get better. RACH is a good hospital and they will be able to help. My DD doesn't have CP but have been happy with the care she received at both the neonatal and children's hospital. Hope she starts feeding soon so you can get her home. I am slso in the NE scotland.
Welcome to mumsnet SN. The SN section is great even though none of us really want to be posting on here.
Don't listen too much to the docs. They always give the worst case scenario but they don't have a crystal ball.
no similar experience, couldn't read this without adding my congratulations- bet she's a little beauty. hope you soon have her home wiht the family.
My DD is also nothing like, but wanted to say congratulations on your daughter. Welcome to mumsnet! Hope you get home soon so you can all enjoy spending time with her.
I just wanted to echo the thoughts of other people here, and to say take each day as it comes and enjoy your lovely baby.
The MRI is a picture of the brain, and an INDICATOR of possible outcomes. My dd's scan was so awful that the Consultant's in the NNU had a long discussion as to whether or not to switch off her equipment. We found out afterwards that the only reason they didn't was because they could not reach a unanimous decision.
When we saw a Consultant a year ago (dd is 7 now) he had been given dd's file, with the scans in it. When he met dd he said he thought he had the wrong file, and wanted to double check her name etc. Basically the scan bears no resemblance to the achievements my daughter has made in these 7 years. She is delayed in all areas, but has very chatty speech, sat up at 18 months, held her head up at 11 months, and is making progress with walking, and now can do about 20 steps on her own, with her splints and Piedro boots on. As someone else said above, we celebrate every single tiny achievement, from a little girl who was so ill at birth she was not expected to live beyond 36 hours.
It is hard work. But we have had very good support from health professionals, who have always tried to help dd achieve her potential. The hardest thing for me is feeling I am on a journey but I have no idea where I am goign to end up. But maybe that's true of life in general anyway.
My sister told me one of the most useful things when dd was a baby. My sister watched me with dd, then came over, scooped her up, flung her about (safely) in her arms and made dd laugh like a drain. I was always terrified of inadvertently hurting dd, and treated her by wrapping her in the proverbial cotton wool. My sister said 'She is gorgeous. She is a little person. She won't always be this small. Enjoy her. Other mums enjoy their babies. Don't make dd feel different'. It changed my whole outlook.
I have been thinking about you and your daughter this morning, and just wanted to post to you. All the very best to you both x
Thank you all so much for your wonderful words of support and encouragement.
I brought my darling wonderful little girl home yesterday.
Im so glad I am now getting to be her mum without eyes, my confidence has already grown and it doesnt matter to me so much now, she is still my wonderful loved and very much wanted baby.
I am determind to do the best and get the best for dd she fought for her life and I will give her the best life I can. I have taken so much strengh from the fact that her NNU consultant, MW, HV etc all have so much faith im myself and DH, they believe we can do so much for her and think she is lucky.
Romy my family are for Paisley, my Aunt has actually been awarded an OBE for her work in a SN school in the area(I cant remember which one) I will get alot of advise from her though I have yet to speak to her direct I have been waiting to get myself together a bit.
DDs consultant said before we left that he was actually very pleased with dds movements, and now I should keep an eye out for her showing a preference. She has been improving her suck also.
The weirdest thing for me to get my head round is she still doesnt cry though makes short mewing sounds when she gets pissed off. Also having to feed a sleeping baby and setting the alarm to feed her.
Again thank you.
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