To be the parent of a preemie
I cannot speak for other preemie parents, I can only speak for myself,
how does it feel to me????
I have to be honest and say it is an awful experience, and one I would not wish on anyone.
There is nothing on this earth that can ever prepare you for this experience. Seeing your child fighting for it's very existence, knowing that there is nothing you can do to help.
Your child is totally dependant on the Machines - which themselves frightened me silly; and the Nurses and Dr's, who deal with this on a day-to-day basis.
We were totally blind when we entered the preemie world, we needed our guides to help and support us, for them to enable us to see the wood for the trees, for them to provide us with information to make informed choices and decisions, to make us part of our child's care, to treat us as equals in the journey.
We wanted openness and honesty, we have not had a good experience, we have been let down so many times. We have not been given information about our son and his medical issues, we came across important information by accident.
Why were we not told about the ROP issue?? Why were the IVH's never mentioned again??? Why did we find out about the Heart Murmur by 'accident'???
We asked for answers to questions we had, about long term complications, and the future, and this information was not forthcoming. A favourite answer seemed to be "We will have to wait and see" this does not answer the questions asked, it does not provide answers, it leaves you hanging and looking over a very deep, very dark hole.
What we wanted and didn't get, was for someone to take the time to sit with us, and explain the in's and out's of everything, the positive and the negative, the chances of having a child with long term issues. What the future could hold for our family.
I realise Dr's don't have crystal balls and that no-one can predict how things will turn out, but the odds would have been good, at least that would have enabled us to make choices, and be prepared for the future.
As I have already said I am amazed at just how ignorant we were about all this; we did not have access to the internet, and so did not have the access to a lot of information that I now have access to. Maybe if I had we would not have been quite so ignorant, I would have realised the long term implications in having a child born so early.
This journey, is a very rocky road to take, there are no easy answers and no easy solutions, it leaves you physically and mentally exhausted.
We were told very clearly that Michael would have caught up by the time he was two. We clung to this, it was a light at the end of a very long tunnel, what we didn't realise at the time was that light was attached to a train. We have been hit so many times by that train, because information we have been given was wrong.
There is no other way to look at this, we should never have been told that. Given how sick Michael was his whole NICU experience, and also during his first year, there is no way he could catch up developmentally, with a child who had no problems, a "normal" full-term baby.
I now sit here with Michael just short of 5 and still not caught up.
We were told that his lungs would have healed, and that any issues he had from the vent etc, would have sorted themselves. A NICU nurse told me, that she only knew of one child who went to school still needing 02, that the lungs healed long before then and all was well.
I think that makes us number two, the 02 concentrator sits in our hallway, we use 02 like some parents use Calpol.
Over the last 5 years I have had to fight just about everyone in order to get Michael's needs met, and assessed. How does that feel???
It is devastating.....when you are looking for support, it appears as if others are turning their backs on you. I have said so many times it's almost as if the attitude is "We saved your babies life - now get on and deal with it"
As was actually said to me "He was premature what do you expect?" followed by "You do not have a baby at 24 weeks and get normal"
If you know that -
why don't I???
The whole experience has changed me as a person, I used to work with people, I could sit for hours listening to people talking about the difficulties that they were experiencing and help them work towards resolving them. Not any more. I found myself becoming increasingly frustrated, and unable to cope with the demands of work and the demands of my home life.
I went back to work after Michael was born, but frequently had to take time off to be with him in hospital or for visits to Consultants. We were not able to find anyone who would care for Michael while he was 02 dependant, nor did we feel we would trust anyone else to be able to meet his special needs, so I worked part-time for a while. But given the complexity of Michael's needs and his development, it wasn't long before I found myself unable to do both.
So work had to go, the older Michael got the more demanding his needs became. The more I found myself being torn apart by the most recent revelation about my son's needs, for 3 years we had clung to the hope that he would catch up. (we discounted his first year given how sick he'd been)
It has taken me a long time to be able to recount the last 7 years and still have dry eyes, although even now I can still feel the lump forming in the back of my throat, when I try to discuss our experience.
Other peoples lives go on, we lost most of our friends following Michael's birth, people we'd known for a long time, who didn't know what to say or how to react.
For those who have stuck with us through this, I thank you from the bottom of my heart.
Our life was thrown into total chaos, trying to juggle a young family, which included one very sick member, who spent the biggest part of the first year in hospital.
We have become very insular, because our lives revolve around Michael and his needs. We regularly forget peoples birthdays, and Christmas is a difficult time for us, so people have got used to us not sending out cards, and I guess not hearing from us for months at a time. It is not because we have forgotten, it is just that life is so busy, months can pass.
I find it difficult to mix with others, because the things that others worry about, sometimes seem so trivial to me, part of it is also not being able to deal with other people's worries and concerns.
I have enough of my own, my life is still in total chaos..
The following link is research carried out in the UK the results of which have recently been released. This research was called the EPIcure STUDY - a link to the research is provided below.
http://www.nottingham.ac.uk/human-development/EPICure/index.htm
The aim of this research was to look at long term outcomes for extremely premature infants. The results of this research were presented on a BBC Panorama programme called "When Miracle Baby Grows Up."
http://news.bbc.co.uk/1/hi/programmes/panorama/3655050.stm
This research found that 40% of children born at 26 weeks or less will have severe learning problems, the other 60% will have moderate problems or fall within normal range.
Michael is one of the 40%, he is in Special Education and requires 24 hours a day, 7 days a week care..........
In my opinion there isn't enough research into the long term outcomes for extremely premature infants. Perhaps if more research was done, then Dr's would have more information at their finger tips to be able to share possible outcomes with parents.
Other professionals would be more aware of the issues faced by parents of prem babies/children and would be able to work with us, and support us in dealing with the day to day things that we struggle with, instead of looking to blame us for our children's difficulties.
Support services are not set up to deal with the long term issues thrown up by a number of extremely premature infants. Families are left to deal with them, without the support that in our case we so needed. Relationships break-down and families fall apart, because of some of the issues raised by these preemie's in later life.
Social Services are involved in our lives, in as much as trying to provide support to help us as a family. Looking for respite care, someone to come in and help by looking after Michael to enable me to do the basic everyday things like, play with his siblings, give them some time and attention, doing some basic housework... etc
We have been on the waiting list for 2 years for respite care. There is a new scheme - Direct Payments whereby SSD provide funding to enable us to employ someone to come into our home to help out. This hasn't worked either, as we've had numerous problems with agencies that I have asked to do hours in the house.
I'm not sure I will ever really be able to describe adequatly the time I have spent in tears, the sense of isolation, the frustration, the rejection, and the anger.
Having a baby is a life changing experience, having a premature baby in our case; turned out to be a world changing experience, Michael has thrown us into a whole new world, one we were not prepared for.
