[Solved] The unknown future
It's really tricky sometimes to know what to put as the subject line on one of these forum posts, and I am going to try and keep this as short as possible so that I don't send you to sleep if you've been luck enough to click on to my first post.
I am a first time father to a little girl, she's going to turn 2 at the end of October but it's been a bit of a rollercoaster and has defnitely pulled my relationship apart with my daughters mum, we are still together but in the last 2 years it's gone from being in a loving relationship, to feeling only like friends, to now be at the point of not even really talking to each other without it turning in to a disagreement over something. Every opinion or chat I try to have, about every day issues, turns in to an argument with me leaving the room.
Before our daughter 'Anna' was born, at the 12 week scan we were informed that things were not looking good and we were advised that the child had a fluid sack (cyst) around the back of the neck which would most likely continue to get larger and end up with the child dying. We were marked as high risk and so we would get a scan every 4 weeks to check on the progress. At the next scan (16 weeks), as the child was growing, things were in better detail, the cyst was still there, it hadn't grown in size but it also had not shrunk in size. The NHS consultants decided to do some genetic testing which all came back fine, with no syndromes (such as downs / turners / edwards etc). At the next scan the cyst started to reduce in size and by the scan after the cyst had disappeared, but no-one could give us answers as to how the cyst had drained or what it may have been due to, obviously we were over the moon as suddenly our daughters chances of survival were looking great.
We were then told that they would induce my partner in a couple of weeks time, as she was classed as full term, due to Anna having short long bones. At the time of going in to hospital to be induced, there was a massive shortage of midwives, and the 'high risk' fact didn't count for anything at this point. They discovered that Anna had turned and was going to be a face presentation, they were going to do a C-Section but due to too much time talking about it, they ran out of time and the natural birth started. Anna was born unable to open her eyes due to massive facial bruising and a traumatic birth. On to neo-natal for 10 days where she was fed through a tube and with an oxygen mask. We were then able to bring her home and start to become a family.
Naturally once home, everything felt perfect, we had everything we wanted, including the lack of sleep as it felt very special to be able to hold her and feed her, although due to the 10 days on neo-natal, the separation between baby and mum meant they were unable to breast feed and so Anna became bottle fed with cow & gate formula.
Since this time, as she is coming up to 2 years of age, she is still not walking / talking or crawling, we have gone through almost every NHS department looking for answers, including back to genetics for many tests which has come back clear every time. We have had hearing / vision tests which came back clear. A CT Scan was performed at the Birmingham childrens hospital and that came back clear on her skull, to check that it wasn't fusing too early. Physio and Speech has now been happening for a few weeks with specialists, and Anna is quite confident with rolling, and she can walk if we support her around her waist, but she would immediately drop due to no balance.
It's got to the point now of frustration as I have asked the NHS if they will do an MRI scan, which they have said they won't. I have also asked if they will do genetic testing on myself and Anna's mum, but they won't. As a father my instinct is wondering whether there is something to do with her brain, or maybe did the 'cyst' that just disappeared randomly actually become fluid on the brain which hasn't been picked up. Unfortunately, I feel we are knocking on doors that don't want to open.
The reason for my post on this forum is that I work in IT, and it's well known that if you go on Google and type in the problem, the chances are that someone else would have been there and done that before and have all the answers... so even though it's a small chance, I am almost hoping there is another Anna out there, that maybe has gone through the same journey and may be able to give me some hope of what the future is going to look like.
The part that we find most sad, is that when we drop her off at nursery, you see other parents dropping kids off and the kids crying or waving to the parent and watching as they step away.. With our daughter, as soon as we drop her in to nursery and sit her on the carpet, she doesn't notice us. It's like she is always spaced out. I wonder sometimes whether it's that Anna is trying to tell us what's wrong, but is unable to, whilst at the same time we are searching for the answers and don't know where to look.
I expect that if we find we are no further forward in the next 6 months that our relationship will have completely broken down to the point of me moving out, and then even less time with my beautiful child.
Anna is classed as being a child with a syndrome without a name, even though genetics continues to come back clear.
Thank you for reading, and please if you have any advice it would be grateful to receive.
Hi welcome to the forum
I'm so sorry to read all of this, I cannot begin to imagine what you are all going through and the strain this must put your relationship under. I don't have any experience in this area to share or advice to give, but have you considered going to counselling with your daughter's mum? It must be a very difficult time for both of you, and you are probably going through very similar emotions with all of this? Counselling might try to help you pull together and understand each other better?
I wrote a comprehensive reply to you earlier this afternoon acknowledging your situation, your feelings and made suggestions as to what you could possibly do to get some answers to your questions and ongoing concerns for "Anna." Frustratingly, on completion, my message disappeared into the ether and is not showing on the site.
Dealing with the unknown is far worse than dealing with the known. Therefore my suggestion would be to go back to the very beginning to try to find the answers to your questions and start afresh with the aim:-
1) to achieve a specific diagnosis
2) establish the cause of the "syndrome,"
3) to have an appropriate plan of care implemented,
4) and to know, if possible, the prognosis.
I shall send you a PRIVATE MESSAGE later this evening with regard to how I personally would try to achieve the above.
Not sure why your post should disappear, MoaF, if it happens again, let us know the time it happened and the admins may be able to find out why. Otherwise, if you think you are going a make a lengthy post, you could type it into a text document, and then cut and paste it into a post, that way if it disappears, you can copy and paste it again.
Thank you actd,
I think I must have inadvertently touched the "pad" which controls the cursor, I always use a mouse. I believe the mistake was mine and not the site.
Thank you for enlightening me as to an alternative way of "cut and paste" into a post but I haven't a clue how to do that. lol
I shall go for some lessons, I am in dire need of them.
Put simply, type into a document, highlight all of the text and either right click and select copy, or press , then go to creat a new post on the forum, and where you normally type, right click and select paste, or alternatively press .