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Brain scan at birth?
ade1173
Member Posts: 8
Hi everyone, first time posting here so I'll give a little background if you don't mind taking the time.
We had twins in April 2010, born 8 weeks early by emergency c section. Our little girl was diagnosed with CP(spastic diplegia) in November 2011 & has since gone on to develop epilepsy in April 2012. Our Little boy had collapsed lungs after birth but after spending time in SCUBU he seemed ok. As he has developed he has always seemed slower than his sister & despite raising concerns at appointments we were always told it was either due to him being premature or just laid back & that he would catch up. He is now at 28 months & has been assessed with Global delay with the abilities of about a 12-16 month old child. This week we have been told he also has CP, despite us questioning this in the past due to his sisters history.
My question to the forum is that on a lot of the appointments we have had with specialists they have always asked if a brain scan was done after birth & what the results were. We have never been told if they had a scan & I was just wondering if anyone knows if this is a common practice for emergency c section births as it seems from the query's from the specialists they assumed it would have been done?
Thanks for taking time to read this, any input would be welcomed.
We had twins in April 2010, born 8 weeks early by emergency c section. Our little girl was diagnosed with CP(spastic diplegia) in November 2011 & has since gone on to develop epilepsy in April 2012. Our Little boy had collapsed lungs after birth but after spending time in SCUBU he seemed ok. As he has developed he has always seemed slower than his sister & despite raising concerns at appointments we were always told it was either due to him being premature or just laid back & that he would catch up. He is now at 28 months & has been assessed with Global delay with the abilities of about a 12-16 month old child. This week we have been told he also has CP, despite us questioning this in the past due to his sisters history.
My question to the forum is that on a lot of the appointments we have had with specialists they have always asked if a brain scan was done after birth & what the results were. We have never been told if they had a scan & I was just wondering if anyone knows if this is a common practice for emergency c section births as it seems from the query's from the specialists they assumed it would have been done?
Thanks for taking time to read this, any input would be welcomed.
Replies
I also have twins by emergency c section, 11 weeks prem.
The scanning practice may depend on where you are, we are in Glasgow and the standard practice was to scan all prems on day 1,3 and 5 and more if needed.
The funny thing about the scans is that we were always told Marten's scans were gestationally appropriate, yet he has severe spastic quadrluplegic CP.
Another interesting thing is that just like your son, Marten had a collapsed lung.
Hope this helps.
x
Our twins were born a month after yours, also 8 weeks early. I had an emergency c-section same as you because Iris (twin 2) was struggling and I had developed a type of pre-eclampsia. Iris was not breathing at birth and was a full pound less than her brother. Tom appeared to be fine. We were a month in the ICBU in Brighton - The Trevor Mann - (just for fattening them up, keeping them warm, developing a suck reflex and sorting out a little bit of jaundice). We were send hom fit and healthy. We had a really tough first year with Tom being in terrible pain a great deal of the time and obvious differences in the muscle tone and development between Tom and Iris. We were also fobbed off, with a colic diagnosis widely agreed on (not by us) and feel that our concerns were generally brushed over quite a lot. Eventually Tom was diagnosed with quad CP at 11 months old. Iris is absolutely fine.
We had a 'de-brief' with the neonatal paediatrician as I was unable to get my head around the fact that a large bilateral area of damage (caused by PVL around the back of the lateral ventricles) was missed in all the brain scans I remember him having in special care. Aparently, unless they feel that there is a specific reason, the brain scans they have in special care are not MRI but instead are ultrasound. Aparently ultrasound scans only look at the surface of the brain, looking at the capilaries and arteries, but are not able to see any deeper than that. So, damage within the brain - i.e something more than a surface bleed, cannot easily be detected.
How are your little ones getting on now?
Maria xxx
Glad to hear both are doing fine!
I am sure Maria would agree that things in NHS are extremely slow indeed. And yes they can be quite blase about things. And not tell you things. We were given a diagnosis just a day before they boys 1st birthday, whilst looking back I can now see that the professionals had made their minds up months before that. Pretty much like Maria, we were fobbed off with reflux.
I would recommend you don't rely on NHS treatment alone. I am sure you have already looked around for alternatives. Have they told you more about you son's condition and prognosis?
X
Thank you both for your replies.
In answer to your query Maria, both are doing ok all things considered, both are happy despite having their problems & a serious aversion to sleep!! As parents though both myself & my wife are getting increasingly frustrated with how slow things are to progress when dealing with the health services & the overall blase attitude when they drop a life changing diagnosis on you. From what I've read on forums & generally from speaking to other parents, this is something we'll have to get used to.
Ade
We're still waiting for the "official" diagnosis & prognosis, but his mobility is nowhere near as bad as his sister so we're hopeful that once he gets some help he could be walking soon, probably with aids, but still walking. What's irritating tho is if he'd had help sooner he would probably be walking now.
With you mentioning reflux we went through better part of a year back & forwards with his sister as she would literally scream the house down every feed & would not sleep. Kept getting told colic before seeing specialist diagnosed reflux & prescribed ranatadin & it was like a switch had been flipped! Looking back now at all the things we took her in for it's like a route map to CP, but it was never even bought up prior to one of our final prem checks & we asked about her scissoring legs & the possibility of CP.. Obviously I don't suppose they want to worry parents till they are sure but myself I'd rather have all the possibilitys explained in order to prepare.
As for alternative treatment, we've not really looked into that as yet, if you can let me know of some websites/links I'd be grateful.
Ade
Our first year with our daughter sounds very much like your experience with your son, I understand how frustrating it can be trying to get your point across when it seems like they just have stock answers & don't seem to listen to your input.
I am in the process of dealing with our local patient liaison service both to see if we can speed things up for my son ( was recommended physio assessment 4 months ago & we're still waiting ) & also to request the full records & correspondence regarding the birth & following appointments so we'll see how far that goes. I personally don't think any scans were done, but that just may be our local NHS policy, from what I've read it changes from region to region.
Just out of curiosity, does anyone know the odds of both twins having CP? We've asked but the subject is always changed or a vague answer given .
Ade
A quick way to check if your babies suffered asphyxia at the birth is to check the Apgar score and capillary blood gas results taken after birth you should be able to get hold of these through your padiatrician or you may have them on some notes
Grace had a MRI scan done back in February this year after being diagnosed November last year.We were told this was just a formality to 100% the diagnosis & see what areas were affected. It was confirmed by MRI more or less what we had been told in November, only slight difference was that some of the damage may be on areas controlling the muscles associated with speech also but only time will tell on that one. They did not go into the possible cause other than to emphasize that she was 8 weeks premature & a twin so the likelihood of CP was higher.
I'm in the process of trying to get hold of the birth & medical records for both twins, while that won't really have any bearing on what we have to deal with now I still want to know, as looking back on the whole thing it does seem that there were some things we weren't told & to me it seemed that one minute it all seemed to be going fine, then within 30 mins my wife was being prepped for emergency C section & it seemed time was an issue.
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Thanks for the reply,
Ade