5 weeks ago my 24 year old daughter suffered a hypoxic brain injury and is in a vegetative state. Although kind in their delivery, the doctors have been quite clear that all of the scans show catastrophic brain damage and that there is no prospect of recovery. Although the logical, rational part of me understands what they are saying, I feel trapped in this desperate need to reach her - we make sure that friends or family visit every day, we read to her - familiar favourites and new books, we play her favourite music and tv programmes and we watch desperately for any sign that the doctors may be wrong - even slightly. As a mother, I can't just passively sit back and do nothing but I worry that the harder we try, the less we are accepting the inevitable outcome and just making things harder for the whole family.
She is out of Intensive care and on a neuro ward waiting for a bed to become available at the specialist neuro rehab centre at Northwick Park but this will be time limited and we get the impression that if, as expected, there is no change then we will be asked to make "best interests" decisions about withdrawing treatment - ie food and water.
This person is not my vibrant, witty, intelligent daughter but she is alive and the more time I spend with her, the less likely it will be that I will ever find the strength to let her go even though she was quite clear before this happened that she would choose to die if this ever happened.
I feel like I'm betraying her if I do nothing but also betraying her if I try to hold on to her. So catch 22. I'm guilty no matter what I do. Does anyone have any advice or thoughts?
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Mel-Bee
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I was in that state for a month in Plymouth Freedom Fields in 1983. My parents were there for me and I did recover. I am living with the brain injury but there is hope. Wishing you all the best and praying for your daughter to recover. Our family experience taught us never to loose hope.
Ask to see her brain scan and have rhem explain to you just why they have come to the conclusions they have. It may help to see what damage has been caused.
Hypoxic brain damage is a cruel one. The beain has been starved of oxygen and the tissue dies, it can not regenerate.
I too was in a coma with very little bit brain activity caused by encephalitis, not expected to survive and tht my organs would fail.
But i eallied after a 3 week coma and at 5 weeks was in rehab.
My scans show lesions which are white patches where the brain tissue has died but in my case it is confi ned to two small areas.
Arm yourself with all the knowledge you can to make any decision you need to .
You say she was quite clear on her wishes should this happen.
When I was finally able to think clearly and rationalise, I berated my husband for his “ I want her back whatever” attitude, I told him he was selfish because I could have been in an awful state, he was even told I could be blind, they have no way of knowing theses things until the patient wakes up, you see. It’s the way it is.
But I am not blind but I now have visual impairments, not so bad that I can’t function, I function extremely well, for me it worked out fine, but if I had survived and been blind or mentally aware and not able , then I would have been in a living hell for me.
This probably doesn’t help, my daughter tells me she would not want my life, she is 28 I am 65, Therin lies the difference I have lived my life, had a career, had children etc etc. I am content to now live with my limitations, it is as if I have aged 20/30 years overnight.
I probably have not helped, but don’t be rushed into anything, You have to make this decision when it is right for you, but try and push away the selfish thoughts and do what is in the best interests of your daughter, that is what we must do as mothers.
You are already grieving for your daughter, I know I would be in your position, she may come back to you but you would have to be prepared for the person she would be not the person she was, that is why I say ask for a detailed explanation of what areas are damaged in her brain and what impairment she might have should she recover.
Thank you so much for your replies. You have helped enormously. I think it would help to see her scans and be able to process what it shows, rather than simply accepting what we have been told. I am sure the doctors are correct, but I think I need to see it for myself.
Giving me your perspective on what quality of life you found bearable and why, compared with your daughter's view was also helpful. This is so awful and it is quite difficult to make good decisions when grief clouds everything so maybe giving it time and trying not to decide anything right now is the only sane way of moving forward.
When i was about to leave rehab i sat with the consultant with my scans and sais ok so what does this mean to me and my future.
He was rather taken aback because i dont think many people ask and they assume you may not understand!
But it was /is my life and i needed to take charge of my recovery.
In your case you are your daughters eyes and ears so do all the asking that you think she would do or what you would do if it were you.
I got the explanations i needed.
I do understand just what you must be feeling. My family spoke up for me whilst i could not, they challenged when they felt they had to and stood their ground when needed, i think they cringed when they saw my eldest daughter coming she was 38 at the time and worked within the nhs.
No one here can tell you what you should do or what will or is likely to happen. I think asking doctors why they have came to conclusion they have is a good idea. I always say until someone actually dies it’s impossible to give up hope as the most unlikely situations do rarely happen. You need to be sure in your head that if you do agree for treatment to be removed that there would never have been any improvement.
My understanding is it’s very difficult to gauge, It is also only a few weeks, at this point I’d assume the brain is still recovering from the trauma let alone working out how to cope.
In other words while she is clearly not going to be the same as she was, who she is next? Only time and effort will tell.
I am so sorry you and your family are facing this... it is a heartbreaking situation. Nobody can tell you what you should do, but you do need to be armed with as much medical information as possible....and keep asking questions of the medical team until you are sure you understand the answers and the implications of all the options. You will need to ask (and face the answers to) some hard questions, including quality of life and what would the future look like for her....and armed with that medical information and with the knowledge of your daughter's wishes, you WILL make the right decision for your daughter and your family.
I wish you strength for whatever lies ahead. None of it will be easy.
Keep fighting for her. Doctors told my family I would die. But my family did the same as you and stuck by me. My tbi was in 1998. I was unconscious for 4 months. Then went to a rehabilitation hospital for a couple of years I think. I still need physiotherapy but I am living indispensably in my own home. My moods have not improved so my husband is now divorcing me. Hopefully your daughter is as determined as me and her mother is to. So keep fighting Drs can be wrong. Give your daughter my love and tell her when she recovers I would be happy to share my experience with her who knows I may beable to offer some help. That is what keeps me going the hope that I can offer some help this must of happened to me for a reason. Let me know how things go please.
Best wishes
Dianna
Dear Mel-Bee
My thoughts are with you all. I suffered a TBI many yrs ago. My injury and situation was different from your daughter's but there is a similar theme. I was in intensive care and Drs said I would be in a vegatative state or would die if I left my coma. Seven weeks later i went back to school to start year 10 and my GCSE yrs. A rapid recovery. My point for you is that things can change quickly for the better or worse. There may be some hope yet for you. But PLEASE take this with a pinch of salt. The longer things go on I assume the Drs can be even surer things won't improve. There is a short window for you to hope before acting on what your daughter would want to happen in this situation. I hope you get the best possible outcome.
So many wonderful replies so their is nothing which I could add which could help you but I wish you and your daughter Gods Strength. I shall prayer for you to have guidance in any decision you make. Try to Keep strong, and always remember that you have many many people who care so much for you both. And HUGE HUGS XXXLove Liz xx
Hi Mel-Bee. I thoughts is for you and family. Lots of good reply but is hard. Nobody know you family, you family is important. All I can do is to give my hope and thoughts. Lots for listening, understanding people on here. Another huge hug xxxxxxxxxxxxx from Carol
I’m a mother and my daughter was in same condition like your daughter. She is better after 10 months from the incident. Don’t lose hope, doctors aren’t always right. She will be better, but it takes time. She is a fighter, help her to be strong, don’t let go of the hope, keep praying for her, God is listening .
I agree that having the doctors explain the scans to you is a good plan. 5 weeks is still early days so going to neuro rehab is the next step and then see where things are at. This is a distressing time and place to be in, my heart goes out to you, you need time to to process all of this. I think go with the plan as it is, see how each day goes. Xxxx
Read my husbands story. Its in my opinion a true miracle and i was given little to no hope! 6 or so wks ago they tried to get me to put him on hospice and add do not recesitate. I declined. 3 days later his sister asked him to kiss her cheek and he did! He wasnt squeezing hands and wiggling toes, but he showed love. Kissing any time asked (only me on the lips, he knew!). Today he is fully conscious, eating, sitting up, joking, just needs rehab for weakness and mild cognitive. He improves daily! A true miracle when drs gave a hopeless prognosis. He was vegetative i believe 2 wks and minimal conscious another 2. Pray, believe, reasearch. I spents countless hrs learning and trying and talking to others etc. I believe he will be home with us by Christmas at the latest. Follow your heart. I will add your daughter to my prayers.
If you dont mind my asking, what caused her hypoxia? How long did they say she lacked oxygen?
Do you see ANY sign she is trying to communicate? They said my hubby was vegetative even after i saw communication. They measured on "squeeze my hand" .....
Ask to see her scans , read up with every spare minute you get my brother suffered a traumatic brain injury 14 month ago they operated and basically said go goodbye he’s likely not going to make it through the night, he spent 8 days in a coma and woke up on day 9 he’s now classed as minimally conscious we are praying he wakes up soon, it’s so hard I’m thinking of you
I was out of it over a year, so my Family was told by O.T.'s who I am told, I played up !! "Your Wife/Mum will never be the same we suggest you put her in a home as we cannot do any more" I cried when they tried to help me but In my brain which had gone through WW3 they were being nasty and when coherent I thought they were trying to hurt me. !! My hubby said "No we'll take her home" phew. I had cares 3 times a day and my husband picked out the ones who he preferred. None of this I remember. Like in the film 6th Sense I saw Dead people my Mum Dad and brothers and one Brother started to sing to me..My Mum said to him "finish that song Barney and no more" Mum never said a word to me !! I saw a tall man who I thought was Jesus and he threw sweets I turned around and saw hubby and daughter looking sad and I run to them. I awoke in hospital after having a shunt fitted and I sang to the nurse. I also had Ventriculitis ,UTI and Sepsis while in there. So glad I cannot remember really !!
Hard call for you to do, what do the surgeons say about it ? Is there any hope for Daughter , I really hope so xx I tell you mine as I thought it might give you hope. Good luck and I really hope your Daughter wakes up or shows some signs she is in there. I did better a home but my brain had oxygen. Even though drowning in fluid. Whatever you decide I just hope she shows signs keep looking for them xxxx Whatever it takes do it xxx Wishing Daughter all the best and hope she shows signs xxxxx must be awful as a Family xxxxx Keep chin up whatever decision you make. Hoping for the best for Daughter xxxx
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