one month old... suffocation leading to CP then eye cancer! A living nightmare....heartbroken!

aimeylady · February 2012

On the 18th of January I gave birth to my darling daughter Evelyn. We had a very traumatic exerience and Evelyn had the cord round her neck twice and was left in my birth canal with her head out to just above her ears for over 30 mins suffocating. The midwives wrote in my note an episiotomy was too technically difficult and did not check her oxygen levels by scratching her head to take a sample, nor did they use vontouse or any other method to help her out as they say now in retrospect there were no signs of distress. Her heart rate dropped to 98 but there was no mechonium.

Evelyn was cooled for three days and was monitored closely in where I gave birth to her. An MRI has shown she has Severe Hyoxic damage with the following areas being affected: There is symmetrical and extensive signal abnormality in the basal ganglia and thalami bilaterally, the intervening internal capsules and also in the peri rolandic and para central cortex and white matter.

James and I were then told on Tuesday 7th of Feb that our darling girl has Retinoblastoma in both eyes and we were rushed to the London Hosital, how one child can suffer so much destroys me.She will be treated for the cancer with Chemotherapy at Great Ormond Street as soon as the genetic results are back, which we hope to have by the end of the week. Brain damage and eye cancer! The doctors have taken genetic bloods to see if Evelyn has a deletion of Chromosome 13. James and I have no history of retinoblastoma. We were then in the london for 2 days (horrible exerience) and then transferred to St Georges hosital in Tooting for Neurometabolic tests on Evelyn, including EEG, Lumbar puncture and blood tests. The Lumbar puncture was unsuccessful on Friday and was repeated today and they did not manage to collect enough fluid so will be repeated again!!!

Yesterday we were told that because of our postcode and where our doctors is located Evelyns follow up care will be provided by yet another hospital, St Helier. Our heads and hearts are a mess and we feel very lost in a sea of doctors and treatments and very hard decisions, we are also very concerned that with so many people involved Evelyn will suffer in the long run with information being misunderstood, test reaults being lost and deartments focussing on their area of specialism rather than the big picture!

I am at the moment terrified for our daughters future as well as how my husband and I will coe with the years ahead, it feels as though we are in a very deep sea and we are all trying very hard not to drown!

How do you stay focussed on one day at a time whne the future is so terrifying?

ScopeHelpline · February 2012

Hi

You might want to take advice from the Childhood Eye Cancer Trust:
http://www.chect.org.uk/cms/

I'm sure that your daughters cancer must be the most pressing issue for you, but if you would like to talk to someone about her brain damage you could call Scope Response 0808 800 3333

Best Wishes

Forums Moderator

mollymoobarnes · February 2012

Hi hon

I probably have nothing to say that would even scratch the surface of what you, hubby and Evelyn are going through. I can send you lots of love, tell you I am thinking of you all and tell you that whatever is thrown at you, you WILL find a way through and you won't drown. You might feel like you are drowning - you might even feel like that for a while yet but at some point these huge violent waves you are riding will ease and you will find that your feet are starting to touch the bottom. My 20 month old twin son Tom has damage to both sides of his brain caused by something called PVL despite having a problem free birth. I didn't think I'd ever get over it - and maybe I was right - but I have learned to live with it and most importantly, he is learning to live with it. Would I give everything to change it? Yes but it's sadly not withtin my power to do that for him.Try your hardest to keep focussed on each day - you are right that the future is terifying and it's just too much for a person to take it all in at once, so just don't try. There is a lot of help out there - take everything you can get. I can recommend Conductive Education when Evelyn gets a bit older. Get a Scope rep to come and visit you when you feel the time is right. Ask all your friends and family to give you a hand if they can. Try and eat. Try to sleep. Find someone who you can talk to when you feel desperate. Keep talking to your hubby but don't get cross when he feels differently to you - men deal with this sort of stuff in a different way to us and it's hard when you feel that he doesn't understand how you feel. Me and my hubby have ridden the storm together but sometimes it felt like we were in different lifeboats! You can get through this - I did and I'm no superwoman. It's terribly hard and I wouldn't wish it on my worst enemy but it is what it is - you just need to do all you can to get the best care for your precious girl.

Love and hugs

Maria & The Barnes Babes (Tom, Iris & Molly)
xxx

imogen37 · February 2012

Hi

What an awful start to Evelyn's life! You must be absolutely devastated! A birth of a baby is supposed to be exciting and wonderful, but to get news like yours.....

I don't have an answer to your question. All I can tell you is that somehow you will cope. Suddenly it will be an evening and you notice that somehow you have got through the day and you are still alive. It all won't be easy, though, but whatever you feel is the right thing to feel. I think it would be an idea for you to post on Bliss website; it's full of experts of coping. Don't be put off by Bliss being mainly a site for prems, there is also a section for full term babies and the people using the message board won't care what gestational age your daughter was born.

Wishing you strenght for dealing with now. One day things will be as good as they can be!

x

mollymoobarnes · March 2012

Hi hon

Just wanted to see how you, hubby and Evelyn are doing? Thinking of you all.

Maria xxx

mrsfox · March 2012

http://www.scope.org.uk/forums/early-years/can-you-help-my-frustration

http://www.london.nhs.uk/webfiles/Corporate/Serious incidents/NHSL S...

If you feel that you need more answers, thinking of pursuing a medical negligence claim. May not be for you but at least you wouild have all the facts and thus be able to make a decision. Wishing you all the best for the future

aimeylady · March 2012

Hi Maria,

Thank you so much for your message, im not doing well at all, my sadness at this whole situation seems to be growing every day, the frustration and pain of this whole situation is terrible.

Since my last post the situation is becoming unbearable, little Evie screams in pain whenever shes awake, the most heat tearing piercing scream you have ever heard, and its every time shes awake, the doctors believe it to be chronic reflux but I just cant take knowing that she suffers. Everytime she is fed she screams and arches her back, contorts and twists in pain, she screams everytime she poo's and all my family agree its not a cry it is a scream.

They are trying her on nutrini milk in less quantity to see if that helps but as I said to the doctors, what would happen if I was at home pooring acid on my child eveyr three hours and letting her scream in pain, she would be taken off me by social services! yet in hospital when feeding her milk abd letting her scream is ok!! day and night!

It makes me so so so sad to my very core that every day she and I suffer, how as a mother am i suposed to deal with this whole situation, i feel as though there is no answer!

evelyn has had her first session of chemo and has 5 more, she has good days and bad days but as I said to a lady from a cancer charity, all the other parents want their child to pull through chemo as they know that once its dealt with their chld will live a normal happy life, I have a fear for Evie that actually her life will continue to be one of suffering and pain, her limbs are already starting to stiffen and at other times be floppy, she stares into nothingness a lot of the time and doesnt seem to resond to very much at all.

I have never known sadness or pain like this and I just dont know how I can stay at the hospital 24/7 looking after her. Im in an isolation cubicle as she is so vulnerable because of the chemo so most of the time im on my own with her. My family and husband are very supportive but they have to work and keep their lives afloat. Some of the nurses are amazing and kind but others make me feel as though I am a failure if I ask for help, they give her drugs late on some days, make mistakes with things and im just beside myslef with worry if I leave and she's on their own for the night as she gags and chokes from the reflux whenever she's fed via the NG tube! I had to suction her myself the other day as I was worried she was going to choke completely!

There is far too much to think about and I dont know how I can cope with all this!

xxxx

mollymoobarnes · March 2012

Kate, you are coping admirably and doing EVERYTHING you can to help Evelyn. I know the distress that the feeding is causing her and you is really intolerable - I had similar with Tom who screamed after each and every feed, sometimes all the way until the next feed, all day and at all hours. For us though this didn't start when he was ng fed - only when he was feeding for himself. I literally couldn't put him down to feed his twin because he arched his back, dripped with sweat where he was so distressed - it makes me cry just remembering it. I never did get to the bottom of exactly what was causing him such distress because at that time the CP diagnosis was being missed and the doctors put everything down to awful colic which they just said would pass eventually (it didn't). A thickener in his milk certainly helped a lot once we got him assessed by a speach and language therapist whose specialism ws eating and drinking. It turns out that he swallows a lot of air when he drinks his tight muscles internally just cramps so it can't escape. We also think that reflux might play a part so he's also on infant gaviscon just in case. The specialist Speach and Language Therapist we have been dealing with is called Amanda Harvey and she has just left us to take up a new post in the Trevor Mann Baby Unit in Brighton dealing with feeding problems right from the get-go. She really is fantastic and knows her stuff so see if someone can call the hospital for you and see if you can get her number or e-mail. She might be able to help.

I know what you mean about the worry about leaving Evelyn but you can't be by her side the whole time because you are going to exhaust yourself entirely. If the nurses behaviour is worrying you then you need to talk to a senior doctor of nurse and address those concerns. You are her mum and you have a right to fight her corner. Find a nurse who is nice and who you can talk to and just talk it all through. I remember feeling so useless because my babies needed me and yet I felt I wasn't able to do anything for them. Some nurses told me how important it was to hold them skin to skin and that as their mother I would do this whenever I wanted and then I would set my alarm and go in for the first cares of the day at 4 am and plan to hold them and the new nurse on duty would tell me I couldn't pick them up and that they didn't need me or my cuddles because we should just pretend that they were still in the womb and give them peace. I was so confused. In the end I was in tears and I had to explain what was upsetting me and they did everything they could to include me more in Tom and Iris's care.

I am thinking of you all and sending Evelyn all my positive thoughts. Lets hope that the pain she experiences after feeding is just a phase and that things won't be this way for long - I never thought Tom's pain would end, but eventually it did.

Cyberhugs

Maria xxx

renacahill · March 2012

Dear Aimey. The suffering you and your little baby are going through is unimaginable. Chemo can cause mouth soreness and nausea so this is also not helping with the reflux problem. Your baby is obviously in severe pain, and if its a high pitched squeal it probably has an element of cerebral irritation, but reflux can also cause severe pain. Please ask the doctors to ensure evelyn has strong pain relief, sometimes they are reluctant to prescribe in case it affects breathing, but sometimes they just overlook the obvious.

I know you feel as though you are not coping, but somehow everyone does. The constant crying is what is distressing you most and making you feel so stressed, if the professionals can help with this you will feel so much better. No one is judging you and finding you wanting, some nurses also feel helpless and distressed in these situations and withdraw emotionally. I hope you are soon at GOSH as they seem more attuned to the needs of parents as well as the child.

Please dont think about the future, just look to getting through the next hour, the morning and then the day. We have all been there and I think its the only way...just focusing on the next hurdle, instead of seeing the dozen hurdles stretching into the distance.

I hope things settle down soon, this is the worst part and things usually ease up with time.

kate
xxx

Lioness · March 2012

Hi, so sorry to hear what you went through.... My daughter was diagnosed with severe bilateral ventriculomegaly in the womb. It was so bad, it had crushed her brain, I was told she would be 'a vegetable' their words....and advised to have a termination which I refused. At 32 weeks, her heart rate started dropping and she was delivered by emercency c-section, completely flat and not breathing. It took eight minutes to get her back. At one day old she was diagnosed with a VSD and TOF... again I was given the option of withdrawing treatment and letting her go as she had a very poor prognosis. Again I refused. She had her first op at two days old and came through it. She had a shunt placed in her head at one week old and came through it. At six weeks old she began to have problems with her heart, she became so ill in the end I signed DNR forms, she came through. At ten weeks old I took her home. Because of the damage to her brain, we knew she would have limited skills, but, she was our miracle so, we stimulated her constantly. At eight months old she had her first big seizure, she had her second and third shunt fitted just before her first birthday. At 15 months she learned to sit with a pillow behind her! At five she learned to walk with a supported frame!! Her first word was pwat at 18 months..... shes now almost ten, its been scary, she has up to fifty seizures a day and she has a limited lifespan, but on good days she walks unaided, she speaks beautifully, goes to a special needs school where she has loads of friends, loves JLS and is going to marry all of them and is the sunshine in my life!! Never give up, your little girl has already proved herself a fighter, now you have to stand beside her and fight with her.... its tough, its scary, at times its heartbreaking but the good times are like winning the lottery! Good luck x

AngelasMum · September 2014

Hi Aimee, Your situation is heartbreaking and I would like to help in any way I can. I'm new to the online community, but my family has been with Scope Respite at Quiddenham for 4 years now. Our Little Angela is 15 in January, she had encephalitis which resulted in a massive brain bleed at 4 weeks old. This not only severely damaged her little brain, but it hasn't grown since. What broke my heart into a million pieces though, was when they told me that Angela would never see. Never have that eye contact when she's in my arms, that every Mum in the world has and takes for granted. So sweetheart, I feel your pain.
Angela suffered dreadful acid reflux for many years after she had her PEG fitted, but another Mum taught me how to cook, liquidize and sieve solid healthy, organic food to put down her PEG tube. My dietician was dead against it, but the results were instant and miraculous. SCOPE saw the difference in Angela and they have researched, supported and even changed their policy, so that SCOPE carers can now administer liquidized foods through PEG tubes! Angela is a much happier, healthier child. All her reflux medicines have been stopped.She was even on oramorph, diazepam and midazolam for the pain and stress she was under. Now she has a bit of Calpol, occasionally!!! Angela is Blind, she cant walk or talk, she has severe scoliosis, both hips have been operated on, but if I was asked what was the worst thing to affect her life a few years ago, I would have said Acid Reflux immediately.So if your Little Angel is still having problems with her reflux, I would love to be able to help you with it, the way another Mum helped me. Or if there is any other way I can lighten your load a little. Angie xxxxxxx

flower · January 2015

Hi Aimee, I hope things are getting better for you? 10 years ago I was in a similar situation with my little girl although she didn't have cancer. I know it feels like you won't be able to cope at the moment but it does get easier. My Daughter cried for a whole year after feeds, arched her back followed by scream etc and i put her on Aptimil comfortable digestion in the end and this seemed to make the situation 100 times better. Im pleased your family are being very supportive because you will need their help at this sensitive time. Your not a failure at all so don't let them few nurses make you feel like that. stay strong and and take each day as it comes.
Take care
Emma x

one month old... suffocation leading to CP then eye cancer! A living nightmare....heartbroken!

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