Possible microcephaly and CP

[SouthEastLondonMummy]

My DD started having seizures shortly after birth, and now, 5 months later, she is right down the bottom of the head circumference charts. We have been told that she has suffered an extensive brain injury (on the right) shortly before birth, and we should expect a left-sided physical weakness. I have accepted this (the physical diasability). But have been searching on Google and unearthed Micriocephaly, and am TERRIFIED. A cognitive deficit TERRIFIES me. She loves her 2.10 year older sister (giggles when she comes into the room), and is a wonderful wonderful baby, but the future is all hazy for me. Life seems pretty surreal at the mo. I have been in touch with the Independent Advocacy people (NHS complaints) as I think we have a legitimate case against the NHS for failing to diagnose placental abruption, but am in pieces about my beautiful DD. I love her so much, but I have let her down so badly. Plus, doesn't this stuff happen to other people??? (I know the answer to that one!)

Sorry to hear that. My DD had the same thing. Placental abruption leading to oxygen deprivation. She has severe quadraplegic cerebral palsy. And yes, she has a little head. I don't know how little but it was below the 5% thingy when she was a baby. But lots of CP kids have small heads. She's now 3.
The first year can be pretty awful with the grieving for a 'normal' baby, worry about the future and the feeling you're living in some kind of weird nightmare that you will wake up from. Plus the world keeps turning unaware of your tragedy.
A cognitive deficit with either CP or microcephaly isn't guaranteed. With CP its reckoned at 20% and even those figures are coming down as new communication techniques are developed for children who can't speak. My daughter has severe CP, has had Infantile spasms, can't move, can't speak but mentally she is completely fine. Despite all the stuff on google!
You can only judge by what she is doing (I'm saying this badly) and not read internet sites or statistics. If at 5 months of age she recognises her sister and is laughing she sounds like she is doing well. How are her other skills?
The best thing to do is play with her and encourage her. The brain is amazingly plastic at this stage and its possible the undamaged side will take over many of the functions of theother side. But like any child, what you put in makes a huge difference.
Good luck with it all. I wrote about my DD in a blog so I could rant and rave and get the feelings out. It helped.

Thanks Bobalinga. Did you have any kind of counselling to help you come to terms with things? I find it so upsetting that she was absolutely fine until the very last minute - if she'd been delivered a week earlier, even a day earlier, we wouldn't be living in this situation. My DH doesn't get the grieving for the baby we've lost - he says this is her now, and that 'other' baby never existed outside the womb...

Are you at SAHM? Do you have any other kids? And do you find that now you can enjoy your daughter for who she is, not who she might have been?

You're right, I do need to keep off the medical sites. I don't think I would be worried about her yet if I didn't know what had happened, though I would be starting to notice that she neglects her left arm. She's having physio and is on strong medication for her seizures, which are well-controlled - she doesn't appear to have had any since she was 5 days old.

Hi SELM. I'm still waiting for counselling although now she is 3 there is more of an acceptance but that first year I was a basket case. Couldn't bear to look at 'normal' babies, hated it if people whinged about trivial things with their kids, mourning for what should have been plus blaming myself. If only I'd had the C-section, if Only I'd given birth in hospital. That sort of thing. I did buy a book called 'You will dream new dreams' although I was angry at the world and thought it a bit sappy. My DH seems ok too and says this is how it is. Having said that, he did write a very moving short story and it was published. Maybe his way of dealing with it.
But these feelings do pass. I didn't think they ever would, that I could ever be happy again. But they do and gradually you accpet your child for who she is, not who she could have been and you realise that even 'normal' children can bring despair and pain and all you can do is make the best of whatever you've got.
I am SAHM, as is her dad now because taking care of a quadraplegic is hard work. She's so bright but can't even hold a toy so she yells in fustration. Plus the first year she was in and out of hospital with infantile spasms, reflux, norovirus. It just seemed to go on and on! I also have 3 other kids to take care of. So last year DHgave up work to help.
Now she is 3 I pretty much accept her for who she is. Those intense feelings have mellowed. Of course I'm still sad sometimes and I wish it was different for her sake. What annoys me more now is the fight for DLA, respite and equipment (you should be claiming DLA and having physio, OT etc)
Hope this helps. I do witter on a bit I know!
Email me privately if you want. [email protected]

SouthEastLondonMummy can you email me please at [email protected]

Hi Selm
Firstly you haven't let your dd down, what happened was not within your control & not your fault.
All the feelings you describe sound like a normal reaction by a loving mother (& very familiar).
Your dd sounds fantastic, certainly at 5 months my ds2 had no awareness of his surroundings, never smiled or responded to us, didn't even cry very much. Now he's 4.5 does have mild CP & few other small problems but is very lively & due to start ms school in Sept.
Have you asked your HV if there are any special needs mother & baby groups near you. A difficult first step but the support & advice from other parents & staff has helped me immensely.
Also do you have portage?
Max x

Thank you so much for all your kind and encouraging responses. I so want to see the positives in this. One of which is, of course, that she is alive.
I will definitely e-mail you, Bobalinga and 2shoes.
My DD2 didn't cry much at all, but she has recently started to get a bit more grumpy, which is a relief in a way, as I thought she seemed almost too easy, and completely different to my DD1 at the same age (who was a nightmare!). She seems fairly alert and generally responsive, and is reaching for things (with the right hand). The neonatal consultant says we won't know the full picture until she is 3, and the stroke she's had would have "wiped out" an adult.
My HV has been rubbish. She came to the house the day after DD2 came out of hospital and told me a horror story about a child who had been ventilated in NICU, came home, stopped breathing and as a result had extensive brain damage, and told me it was imperative that I keep my older girl away from DD2 as a cold could kill her. Was not what I needed to hear at the time. Sorry, inconsequential rant....
MMM, portage sounds v interesting, have just looked it up on the web (agh, Google again). Should I try and self-refer?

You could try & self refer or if your HV is rubbish (she sounds useless, maybe we have the same HV ) some areas have Special needs HV's who may be able to help ask your GP if you can swap for for a HV with some sense!
I never had portage with my ds2 but have heard such good things from other parents (at sn group) I feel like we missed out on something that may of helped him.

hv's are not always best placed to help(i re read my little red book yesterday and was shocked by the lack of support i got)
depending on what area you live in you need to be assesed and to get a multi disiplinary approach in place.

Hello SELMummy. A thought about HV. At our child development centre, we had a special HV, who was in the know about all sorts of essential information and resources. It might be worth enquiring if there is a special health visitor - they don't automatically tell you these things.

Do you think it would be wise to avoid looking at google?! It can be terrifying but not necessarily relevant - I think (for me) the person I really listened to was the physiotherapist. She had seen so many children with CP etc that she had a very good idea of my ds future even when he was 18 months old - she correctly predicted his physical abilities. But 5 months is so very young to try to ascertain the future for her.

And yes, these things are supposed to happen to other people...we have just won our case for negligence against the NHS (took 7 years) and another 3 years perhaps to finalise the payment. STILL can't believe it happened to me. having said that, I am contented with life and enjoy my ds immensely. I don't feel it necessary to tell you my ds abilities/disabilities because every cp child is different, but very special! Although he has cp, he is still a child just like any other in many respects. I hope this helps a little

Thanks FioFio. What she said really scared me at the time as my DD1 has a constant cold, as toddlers do, but there is no way I could keep them apart. I did spend one weekend holed up in the bedroom, while DH looked after cold-riddled DD1 but it was madness, as it just confused poor DD1 who was already adjusting to a new sibling and a newly distraught mother.

I will ask at our Child Development Centre re portage and special health visitor - DD2 is due to be checked over by them in the next month or so.

We have our first appointment with neurology since discharge on the 4th June, and I'm scared stiff.

It's amazing what life throws at you, hey? And we just have to deal with it. I think DD1 has forced me to carry on in a way, as I can't bear the thought that not only has my beautiful DD2 has been damaged, but my DD1 might be scarred by the repercussions.

"I can't bear the thought that not only has my beautiful DD2 has been damaged, but my DD1 might be scarred by the repercussions." (sorry new, don't know how to do copy and paste quotes)

I too feel like this, my DD was nearly 5 when DS was born- her life was turned upside down. Almost overnight the fun, energetic time-rich sahm she was used to disappeared and in her place is an exhaused, stressed and busy mummy who can no longer lay in the garden watching the clouds as DS is not safe to leave, or needs physio, or salt or there is a consultant to chase/paperwork to do etc.

Although 2.5yrs down the line, that fun mummy is starting to re-emerge as life gets easier. As for DD? She is slightly quieter and more thoughtful than she was, but I don't think there is any long term harm. You'll get through it and discover depths you didn't know you had, I know I have.

this thread has made me cry, to think that people are left floundering by the health service and get having to get on with things and battle through despite having so much to deal with makes me angry angry angry. You all have my utmost respect.

riven, my heart goes out to you it reallyl really does. My DD lives with my mum, not because of any real problems at home, but because she is a selfish wee madam who wasnt getting away with things at home. Shes not a bad girl, just a normal hormonal teen really. We have had a difficult couple of years since DD born, who happily is perfectly healthy. I wonder if DD1 is a bit jealous, alot jealous maybe. Sometimes i beat myself up over it, other times i think that she is just being a teenager and that im lucky that my mother is around to help out. My point being here is do not blame yourself, its ok to think that DD is being a bit selfish because it is what teenagers do. A friend of mine is pulling her hair out with her DD of the same age to, perfectly "normal" family. Also, if i remember how self absorbed i was at that age as well. Give your DD some space and time, she will be back and probably be a great help. I know your situation is much different to mine but hang on in there, you are a wonderful mum and your hands are tied to a certain extent. When DD grows up a little she will realise this. I think it takes a really strong mother to let go like you have done and allow your dd the space she needs, really, its completely self LESS of you to do that and you deserve a medal if you ask me. Your kids are lucky to have you, and as i said in my previous text i have nothing but respect for you.

riven, i hope you have a better week next week

i have a dd2 who has hydrocephalaus which is similar microcephaly i had a full term no complicated birth and 2 weeks later i sensed something was wrong her fontanelle had rised and then scans did confirm hydrocephaluas after that she started having seizures and at the moment she is a 4 year old who is sensory impaired and epelaptic the first year was horrible waiting for her to reach her milestones comparing her to children her age drove me nearly mad i somehow did come out of it and now just take it as it comes i dont say it cant get any worse cause believe me every time i did say that something worse did happen i did blame myself and the professionals as it hit me really hard i took my perfect baby home and 10 days later what happened? i had so many questions was it the procedure she had when they inserted her shunt that they damaged the nerves in her brain or was it cause i had a water infection while i was pregnant i covered all angles in the end i think time answered some of the questions as i got used to her and the way she was wwe have some good days and a lot of bad days but the good days outweight the bad ones. i had no counselling my gp prescribed me some antideppressants but i did not have postnatal depression i was just worried and feared the unknown.

so take care of yourselves and your special little people.