Brain scan at birth?

ade1173

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.

imogen37

Hi

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

mollymoobarnes

Hiya

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

imogen37

Hi

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

ade1173

Hi Imogen & Maria.
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

Albysmum

Hi Ade1173, I also have twins girl/boy born Aug 2007. They were born at 32 weeks. My little boy was very ill and in SCBU for 6 weeks after. He had Scans at 1,3 and 5 days I believe this is routine. The same as many people on here I was told everything was fine and the scans were all good. I left the hospital thinking everything was OK. The first year was a nightmare he would scream all day and night, we were told colic, reflux and even he had a bad temper. I knew something was wrong and every time I questioned the doctors and so called experts was told I was suffering from depression and go home and sleep. When my son was 1 year old I spoke to my GP about the concerns she showed me copies of the letters the hospital had sent to them, while reading through I found one with HIE, I know nothing about this. I went home and checked on the Internet and found out it was caused by lack of oxygen at birth. I then got a copy of our medical records form the hospital. When I received them was so angry was never informed about anything and horrified at the way the birth was handled. My son was never diagnosed until he was nearly 2. We had a MRI to confirm this. We had to change hospital when he was 18 months because I believe that they did not want to diagnose my son with CP because they did this to him at birth. I am now taking legal action against the NHS and have been for nearly 4 years. Twin births are high risk and are not carried out the same as a single birth. They know the risks with twins and are expected to act immediately. I know a few parents who are also taking legal action and some who have won. Maybe you should get copies of your medical records to check the scans were taken and what the results were. Have you been told why they have CP. Just because their twins and prem doesn't mean they should have CP there has to be a reason, if you want to chat more I'm here. Take care Jo. Sorry to go but get very angry about how twin births are handled by the NHS.....

ade1173

Hi Imogen,
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

ade1173

Hi Albysmum, thanks for the reply.
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

Albysmum

Hi Ade, Has your daughter had a MRI scan yet? My son had scans at 1,3,5 days was told that they were all normal. He had MRI done at nearly 2 years old, we waited 8 weeks for results went to GP for results and told the report had come back all normal, 2 weeks later had appointment with neuroradiologist when see seen my son said that she wanted the scan read again for a second opinion. A few days later got a phone call to say my son had cerebral palsy caused by asphyxia at birth. I have since had the scans at birth read by our medical expert neuroradiologist and he confirms that the scans showed damage even though the NHS said they were normal. A MRI scan can tell you were the damage is and when it happened and what caused it. With both twins having CP I would question why. It could be a number of reasons CP can be caused by infection before or after birth, a bleed in the brain, PVL, and asphyxia before or after birth. In my sons case both my babies were left in distress before birth and they delayed the birth and resuscitation. Our medical experts have agreed that if he had of been born just 10 minutes earlier that no damage would have been done. Just 10 minutes. I have found in the last 5 years that you have to shout to be heard and dont take NO for a answer. Take care Jo
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

ade1173

Hi Albysmum,

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.
.
Thanks for the reply,
Ade

Albysmum

Hi Ade, If you need any more info I cant leave email or number on here but you can find me on facebook Jo Mchugh Sherlock. I can give you any advice you need if I can Thanks Jo