Micro Premie Brain Injury

[Mummyduck2324]

My DD was born 6 weeks ago at 23+4. She has had a very rough few weeks including NEC and what they have described as a stroke on the right-side of her brain which occurred somewhere around week 4. We have been told she won’t escape having some sort of disability but they cannot tell us much more at this stage. I’m just wondering does anyone have any experience of this ?

Thank you.

Not exactly. My daughter had a stroke either just before, during or just after birth. We only know from brain scan evidence age 1. Yes, she has her difficulties as a result, which obviously led her to being scanned then and will be life long. But what I would also say is that, age 4, we were in a consultation room at GOSH. There were FIVE consultants crammed into the room as they wanted to see the actual child. Her brain scans suggest that's she should have quite severe disability but the child shows something different. The brain is a wonderful organ and has wonderful capacity to adapt. I don't want to give you false hope but I just wanted to share my story of brain scan and child not matching in the end!

@OhWifey thanks for the response. The doctors can paint a pretty bleak picture but at the same time say because it’s just one side she may only have minor difficulties. It’s just hard to wrap my head around it because we won’t know for long time what the impact has been. One of the nurses told me read the baby, not the scan and it’s given me some comfort.

I'm so sorry. Praying for your daughter.

Hey, congrats on your daughter! I do have a micropreemie. Mine didn’t have a stroke so I can’t advice on that but just wanted to say (as this board is quite quiet) there is an excellent Facebook group called Parents of Preemies support U.K. loads of people on there of micropreemies, some who have had strokes. Some with disabilities and some not, despite the odds. Altogether many uplifting stories though from all sides, as well as lots of support and advice🙂

@DifficultSituation999 thanks for that. I’m not on FB unfortunately but thanks for the info. Hope your micro preemie is doing well. Our little one is doing a bit better now, she had awful trouble with her bowel. It’s been a really hard few weeks.

Yeah and it’s really really hard, I feel for you. I don’t really use Facebook but it’s a private group where you can also post anonymously, so it may be helpful to you even if you don’t use Facebook. The bowel stuff is quite common and will hopefully get better with time. Take it one day at a time and look after yourself. My little one had lots of challenges but is a healthy happy school aged child now, there is always hope.

Hey- I know you posted a while ago but I just read it and just wanted to share my experience. My twins were born at 23+4 in 2020, my girl had a grade 3 on one side, she had an MRI when she was about 10/11 months actual. It does show damage but neurologist said she does not present as having any difficulties. Had paediatric developmental apt a couple of months ago so around 18 months actual and he said he couldn't see any real delays currently. We obvs have to wait and see but one of the consultants explained that given the amazing neuroplasticity especially when they are born so early the brain has a habit of working round and issues. My girl would only look to the left until she was about 4 months, slowly she started to improve and now she has no asymmetry at all, physio is every 4 months and they see no signs of CP or anything. It's so scary but you really can't predict how things will go. Lots of strength xx

@twinnovice , thanks for your reply, it’s quite reassuring! We know we know it’s a bit of a wait and see for the next while but it is encouraging to hear positive stories of older kids. We have been hit with all the micro premie struggles, NEC, ROP etc and she has fought her way this far so we are incredibly proud and will face everything with her as she grows. Things were never going to be easy when you started off weighing 1lb! 💪💪💪

We luckily avoided NEC but both had rop, boy had to have laser twice! My girl has just been prescribed glasses, I swear she has worn them for a total of about half an hour in the last month! How are you supposed to get a toddler to keep glasses on??!!!
It really is the most awful experience in NICU and I still think about it a lot but my babies are just amazing and I could burst with pride. We went back to the hospital last year and one of the consultants said "amazing, they don't even have preemie heads!"
Breathe and Grow- that was our mantra and that was what the babies had to do. My girls girls lungs were really bad, Dr's kept saying we just had to wait and she just needed to grow. We were all prepped for her to come home in oxygen then she decides she can do it on her own and hasn't looked back since! X

@twinnovice - that’s amazing! Preemie heads 😂😂🙈 I love hearing success stories like this 💜💜💜. The NEC was chronic and ultimately what caused the brain injury with the stress on her body, she was septic and couldn’t pass urine or stool at it’s worst, then her bp tanked! 79 days in now - she’s finally starting to grow (difficulty with this as she has a stoma bag). Lungs were very bad but she’s down to high flow oxygen now after a round of DART steroids. Only found out about the ROP diagnoses yesterday and she had Avastin injections today and they’ll check her weekly , very likely she’ll get laser. She’s honestly had nearly every complication related to preemies but she is so strong and we are so proud of her. Very aware how lucky we are as a 23 weeker passed away in our NICU last week. 😪😪😪

My DD wasn't premature but she got stuck, was still born and suffered oxygen starvation and her MRI at 10 days old showed brain damage. Her brain activity for three days after birth was flat line and we were told either she won't survive or she will with a diagnosis of CP. I don't want to give you false hope but I also wanted to say don't give up because our DD at three years has no health issues at all. The infant brain is an incredible thing and can grow around the most difficult of circumstances. I wish you all the best x

@Mattieandmummy - that is incredible! They have said that to us about the brain too that some functions can rewrite themselves but there’s no way of knowing! We haven’t had her MRI yet as she needs to be past her due date but we are hopeful 🤞🤞🤞. Currently dealing with one preemie issue of her gut / weight gain which has been a problem since surgery but everything else seems to be ok now thankfully - she is really alert and active - thanks for the response!

Anecdotal really but my husband and his twin brother both had brain bleeds and their parents were told they would be disabled (1980s) one is a judge and one is a financial director. No issues

Hi @Mummyduck2324 how is your little one doing now?

@Snickers94 - she is doing well. Home 7 weeks now - she is 13 weeks corrected. She is smiling ,starting to laugh and fixing on objects, moving limbs well etc. She has very good head control. She is due laser eye surgery in the next few weeks but it we have been told it isn’t urgent. They told us expect to come home on oxygen, feeding tubes, with stoma and several meds. She has none of that and is feeding orally and gaining weight. She is doing great since her stoma was reversed in March. We will have to wait a bit longer to see are there mobility or cognitive issues. Her MRI didn’t appear great but the doctors said that cannot determine function so it’s just wait and see for now. I will say she is doing far better than we were told to expect so far.

Well done to your little duckling! That’s fantastic news.

@ThatPosterIsSoRight thank you - she is such a trooper!

Yes so happy to see such a positive update 💜 May she grow up to be healthy and happy 🥰

@Snickers94 thank you xx

Hey! My daughter had a grade 4 on the left, affecting her right side. She has autism, didn’t talk til 4.5, epilepsy (didn’t appear until she was 7ish) but in main stream high school and she won’t stop talking now 😂

@Purringcat3 sounds like she is doing great! I love hearing about older kids😃. Is her right side badly effected?