Is hospital to blame for my child’s disabilities

[Soul31]

Hi, I’m after some advice please. Back in 2012 when I was 33 weeks pregnant with my first child I went for a routine midwife appointment and I was measuring slightly larger than I should have done for my gestation. She said it was probably nothing to worry about but booked me in to the local hospital to be seen by a doctor and to have TORCH blood tests.

I had the tests and a scan and it showed I was positive for CMV and the baby was a lot smaller than he should have been plus echogenic bowel and I had a lot of excess fluid. I was then told I’d need to be induced ASAP so I had my little boy at 35 weeks. He was born weighing 3 pounds, could hardly breathe and spent 15 months in intensive care due to respiratory failure. At one point I was told he was definitely going to die. Fast forward to now and he’s profoundly deaf, severe development delay, can’t talk, can only walk with assistance and is fed via gastrostomy tube. He attends a special needs school and he is a lovely happy little boy but I can’t shake this feeling of how such a severe infection was missed until I was 33 weeks pregnant.

I had my second child last year, a healthy boy and obviously because of what happened to my eldest son I made sure I had lots of scans and questioned Everything! What is playing on my mind though is that I was told my blood results during my first pregnancy indicated a ‘re activation of CMV’ so when I was pregnant with my second son I insisted a virologist check all my routine blood results to check it didn’t ‘re activate’ again.

The virologist report came back saying that it’s likely during my first pregnancy that it wasn’t a re activation, it shows it was likely to be a primary infection hence all the problems my sons suffered as when he looked back at my routine blood tests at my 12 week appointment for my first pregnancy certain things were elevated. These were not followed up/ questioned.

Any advice/ thoughts welcome, thank you

I think it depends entirely on what was "elevated" at the 12 week booking bloods. I assume it was something like lymphocytes which could indicate a viral infection, but to be honest if I was reviewing the results I would assume you had a cold or something and not think much more of it if it was only slightly raised. In my area they don't routinely test for cmv at booking, just HIV, hepatitis, rubella, blood count, syphilis... etc.
I understand it must be really hard for you to have a child who is so unwell but by looking for someone to "blame", will it help in any way? Would it be better to focus your efforts on something positive instead?

Sorry, I have no answer to your actual question but just wanted to say how sorry I am for what happened.

And also, I think it's totally understandable for you to want to find out if anyone was at fault. Why wouldn't you? I would. As long as youre prepared to accept it may not have been preventable with the standard tests taken. If somebody was at fault though, of course you deserve to know.

I understand it must be really hard for you to have a child who is so unwell but by looking for someone to "blame", will it help in any way?

Is it possible the OP might be able to claim some kind of negligence compensation to make her and her child’s life easier?

Or maybe the hospital might consider reviewing their procedures to prevent this happening to someone else.

Sorry for what you've been through. Have you been in touch with CMV Action for advice or support.

Thank you for your replies.

I did write a letter to the midwifery department shortly after his birth questioning why this all happened and the head of department wrote back basically saying my pregnancy was progressing as it should have done up until that point and as CMV is not a routine test and they’d said it was a re activation I left it at that.

Now after having my second child and the doctor telling me the virologist is saying my infection was actually primary, I just feel that I should have been offered more blood tests after my routine bloods at the 12 week point in which case I consider this to be negligent because at that point at least I’d have known how badly this virus affects babies and I’m sure there’s treatment they can give to help prevent symptoms. I guess I’m feeling angry as well that my baby suffered whilst I was pregnant with him as well as everything afterwards.

I find CMV action very helpful, it’s awful that CMV is hardly known about and the damage it can cause.

From what you've written it sounds unlikely any negligence happened. CMV is not tested routinely, reactivation or primary. You received standard pregnancy care and the midwife acted appropriately when she picked up on the size.

The only possible error was if your blood test results came back alarmingly out of range. One result a bit out of range doesn't mean that further blood tests are necessarily required although usually would be followed up by another. A number of results out of range or one significantly out of range would. Have you have a copy of this blood test results?

No I don’t have a copy. I was sent a letter after the booking bloods saying there was indication that I had an infection. So I took it to the midwife and she said not to worry as certain things can be elevated when pregnant as you and pp have said too. If that’s the case though and things being elevated is nothing to worry about I don’t understand how my son can then have gone on to be born so severely disabled as a result of this.

The results of my booking bloods from my first and second pregnancies were compared by the virologist and shown to me by the consultant who said the results of the blood tests were a lot higher than for my second pregnancy which then signified my infection was in fact primary.

The point is that things being a bit out of range may just mean you've had a cold recently or similar. A bad headache may mean you have a brain tumour but in the vast majority of cases it doesn't. A doctor isn't going to test everyone with a headache for a tumour just on the off chance. They need other indications. The same is true if your bloods were just a little out of range.

If they were a long way out of range it may be that it should have rung alarm bells but no-one on here is in a position to say anything definitive. If you think you may have a case you need an expert to take a look at the bloods from your first pregnancy and decide whether or not the doctors involved were negligent.