Our lives turned upside down

drbrunel

Around 5 months ago my wife was admitted numerous times into 2 separate hospitals with severe abdominal pain..On each occasion she was given the thumbs up from the general surgeons as well as the gynae specialists and re-assured that her agonising pain was unspecific pregnancy pain and basically told to "suck it up"

1 month later, at the end of Jan, she collapsed whilst at work at the Royal London Hopsital (she is a nurse)

Doctors still struggled to diagnose anything wrong, but eventually were forced to perform an exploratory laparotomy...Cutting a long story short, the routine operation turned out to be a life saving one for both mother and our unborn child...Laura had 13 individual things that any one of could have killed her....However, doctors had to remove all of her small intestines which was devastating...My wife needs to be connected to TPN (IV food) for 12 hours a day for the rest of her life. In addition, she will never be able to eat or drink again and we know that one day she will go into organ failure...this may be tomorrow, or it may be in 40 years time...

We did have a miracle though in that our baby did survive such a major operation and held on for another 6 weeks. Its at this point however that the our little boy "Theo" went into distress and was born 3 months premature...

At first he seemed to be doing very well and was off the ventilator within 12 hours... We however got some further devastating news in that he had suffered a stroke in his right quadrant of his brain and had grade 4 bi-ventricular bleading....He subsequently underwent 2 lumbar puncture and 3 ventricular taps after being diagnosed with Hydrocephalus

2 months later, he was discharged from hospital after the hydrcephalus apparently "fixed itself"...mother and baby are doing amazingly well considering what has happened..In addition im just about holding it together and always being as positive as I can; however even writing this is bringing tears to my eyes

Theo is now nearly 4 weeks corrected age. We have been told he is high risk of cerebral palsy...He may be complteely disabled, he may have no problems at all...we just dont know and time will tell..

I am none the less preparing myself for the worst and doing everything in my power to make sure Theo is getting all the support he can as well as doing everything I can for my wife.

As of right now, Theo has had various follow ups with his hospital and various physio sessions...He is doing everything a "normal" baby should be doing. At 4 weeks, he has passed all vision and hearing tests, can focus and track objects, can smile, can lift his head left to right and is beginning to lift his head up and hold when on his stomach. He is also putting weight on nicely

What I wanted to ask is what I should be looking out for over the next year or so, or is there anything that I should be doing to help that I dont already know about...

Whatever happens i am grateful for what we have. My wife has always been my hero but is even more inspirational now to me. As for Theo, whatever happens, I shall love him no less.

Thank you all for any advice you may be able to provide.

Leilasmum

Hi there.
First of all, congratulations on the birth of your son! Secondly, I really feel for all three of you. It must be difficult to accept that life has thrown this at you! But it sounds like you've got the right attitude to come to peace with your situation.
My daugter was born 11 weeks early and when she was discharged there was no indication that there was anything wrong with her, apart from a failed hearing test. The hearing has turned out to be only a very mild loss in the high frequencies, nothing that needs intervention or can be noticed by us at home. However, in February, when she was just over 12 months corrected age, she was diagnosed with mild spastic diplegia, which is mainly affecting her legs and feet. I have been quite upset that this was not noticed sooner, especially since I'd noticed the first sign that something was odd when she was only six months corrected age. She never played with her feet and never even lifted her feet up towards her head. Only back then I didn't know it could indicate a problem, I just thought it was a bit odd, and the consultant said she might still start doing it later. Other issues started apearing which then got the attention of health visitors and pediatricians and eventually led to the diagnosis.
I would suggest you do baby massage with Theo on a very regular basis, this will be really beneficial for him, even if he turns out to not have any motor issues. Swimming is also very good exercise for high and low muscle tone alike. As far as his development at home is concerned, just keep an eye on him using both arms and legs in his movment patterns, for example. Is he comfortable with you bending his arms and legs? Does he mind you bringing his feet up to his face? (My daughter didn't like us doing this) Sorry, got to go, she's just woken up. Just make sure you nag the professionals if your gut feeling tells you something is not quite right. Waiting lists for therapies and appointments with experts are very long and you wouldn't want to waste precious time! At the same time, enjoy every hour you spend with your little boy and don't worry about his future too much! You don't know how things will turn out, so you might worry about possible scenarios that will never actually take place! I wish you a lot of happyness with your wife and baby! If you want to ask me any questions, don't hesitate. I hope this helps a little bit :-)

Eviesmummy

Hi,

My daughter is 2 and was born 10 weeks early. While in Nicu they scanned Evie's brain to check that everything looked ok (apparently routine?).

They found that she had suffered lack of oxygen at the time of her birth and that had caused some brain damage (periventricular something), which indicated that she would almost certainly have Cerebral Palsy, although to what degree they could not say - they gave us the worst case scenario which was devastating!!

Evie's dad (Dan) found it really hard not knowing what she would and wouldn't be able to do - whereas I was more like a one day at a time attitude !

Evie was doing everything that a 'normal' baby her age would be doing up until about 6 months corrected, when it came to sitting it just didn't happen, and the things that should follow on from that never seemed to happen either.

From about 4 weeks of age Evie has had physio and OT every other week which I feel has been really beneficial.

She turned 2 in March and has not long started crawling, now we're working on getting her to pull her self to standing.

We were told that our daughter would not smile, walk, talk, be able to swallow properly, sit , stand etc etc and all the above things except walking she has proved them wrong !!

I used to take Evie to water babies which she loved and I quite enjoyed it aswell.

It sounds to me like you are already doing everything that you can possibly be doing at the moment - just enjojy him while he is still a baby - I used to find that I was wishing the time away so that I could see what she would and wouldn't be doing - I look back on it now and regret that !

Congratulations on the birth of your little boy and if you have any other questions please feel free to ask !

xx

drbrunel

I cant imagine the strength one must show to get through what must be the very difficult first few years when there is just so much uncertainty...Just like your husband, I just want to know one way or the other, for the reason being that Theo is what is driving my wifes recover and dont know how my wife will take it if Theo develops problems...

I find it so hard to believe that he may have problems in the future as he has never had any problems feeding, is smiling lots, can move his head quite well in all directions, has full mobility in all his limbs and is very responsive...all of this at just 4 weeks corrected age...

I understand it can take a long time for problems to show if there are going to be any, and as you we are just trying to take one day at a time and enjoy everything...We will certainly love him no less, whatever happens...

Swimming definately sounds like a good idea and will definately do that so thanks for the tip...

I have to admit, myself and my wife certainly lived in our own perfect world before this all happened and our little cacoon was smashed...It s completely changed my outlook on life as Im faced with the possibility of loosing my wife and having a disabled son...I certainly have so much respect for people that are battling the same problems no that I have the same problems myself and can understand things a lot better..

renacahill

Hello there
Congratulations on the birth of your lovely son. I agree with what the other posters say and just take one day at a time and rejoice at every milestone met. My grandson was 4 1/2 lbs because of placental insufficiency and born following placental abruption. He was not breathing and no heartbeat following emergency c. section and went on to fit and scare us all to death!! His MRI showed 'patchy' damage to the basal ganglia(movement control) so CP was always on the cards and he was monitored and had physio and OT from the beginning. The fitting stopped (thank heavens) and the only instructions we had was watch for the milestones. Like your Leo he smiled, held his head up, breast fed beautifully, but failed the milestones. He was eventually diagnosed with spastic quad CP. (mild) He is now 21 months and can do a nice sit, unless he moves suddenly, has all his gross motor skills, but is behind. We can see that all the elements for crawling, walking, standing are there but because he is so uncoordinated he's yet to do these things. We say he can do all the right things but not necessarily in the right order! The physio is very positive and we now know what is needed. He also has hydrotherapy, special equipment, etc.

I sincerely hope Leo has escaped any difficulties, and his early progress is very very positive. Every baby that has CP presents differently - which we found very frustrating as we wanted a blueprint about what to expect (my daughter is also a nurse by the way) following the MRI. We know exactly what you mean about the shock of entering a totally different world from the one you expected, but Elli is an absolute delight and we take each day as it comes. Totally agree that you end up wishing their babyhood away wanting to know whats going to happen! It will probably take 9 months to a year for any problems to manifest, but because of the prem birth he will be closely monitored and as early intervention is the keystone to good outcomes so precious time will not be lost.

If problems do come to light there is lots of support, which you will both need. Sadly having a disabled child is very isolating if you let it become so, family are usually the best support you have, but it takes months to adjust fully to what happens, but the fear and anxiety does ease with time and hopefully Leo is one of the lucky ones and you will never have to travel this path.

Wishing you all well and stay strong
Kate

adams209

Hi -
My grandson, aged 2years 9months, has finally been diagnosed with mild cerebral palsy. He was born by emergency C section and suffered a severe infection which resulted in being in SCBU in Southampton for a week, then a further three weeks in SCBU in Dorchester. During his first year he was admitted to hospital a further three times with chest infections.
You ask about things to look out for. Being unable to hold him much for the first month of his life due to incubators and tubes I never noticed it but when he came home I thought my daughter and her partner looked awkward holding him - I then discovered it was him, not us. It felt just as though he was slipping through our hands all the time. We then noticed that he did not put his legs down to push up as babies usually do if you are holding them upright. Another sign - we used to jokingly say he was double-jointed - was the action of his shoulders. At first he was diagnosed as a "floppy baby" and told this would improve, he would just be slightly later developing. However, the inability to sit, the inability to grasp items, language development were all very delayed and whereas young babies always dribble his dribbling continued and still does now, and he is still not walking - he does have the most wonderful smile and laugh!! At about 18 months he began physio, there were leg x-rays, head x-rays, etc. and only now, after being referred to Southampton hospital, has the pediatric neurological team diagnosed it as Cerebral palsy.
I have a friend who has a 12 year old son severely disabled with CP and she has just passed me a book "Handling the Young Child with Cerebral Palsy at Home" by Nancie R Finnie (Butterworthy-Heinemann) and just from a quick look through I wish we had had this book a couple of years ago. So if your baby should suffer from CP - God willing he won't - try and get hold of a copy. All best wishes for the future.

renacahill

For anyone ( especially adams209) I always recommend this book http://www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_1?ie=UTF8&s=books&qid=1277756914&sr=1-1 . It is so good that our physio bought one for the department. We've been at this game a while now and its the best I've ever found. loads of step by step pictures.!