TTTS Awareness Support

[daire and odhrans mum]

Many of you know my story about having to travel to London for the Lazer and amnio reduction to try and save my boys...  For those of you who don't I will make this brief.

When Gavin and I found out our boys needed the surgery we travelled from the Royal Maternity to London totally unaware of what we were going to face.  I found out on Wednesday during the post mortem that the consultants did not think I would have made it on time as they were convinced that my waters would have broke before reaching St Georges in Tooting. 

It is disgusting to think that the medical profession sent me there without any maternity care in the event that had I gone into labour in Belfast international airport, on a flight,  or in Heathrow, or in the back of a black cab going through London, that I was all alone without any midwife to support me.  Gavin and I made this journey alone.  We had to face being in the busiest airport in the world, try and find St Georges and then find our accommodation.  Then travel home with the devastating news that one of our twins had died, our other son died on the way home.

I am so angry that we were left to go on that journey alone, and that no medical care was provided to us on our travels over and back home, also we had to pay for our own accommodation and expenses etc, however after many a phone call we did get them back.

To channel my anger and to do something positive for other parents who might be faced with this horrible condition, Gavin and I are setting up a support fund so that the money will be available to send a midwife over with parents and "handover" safely the mother to the hospital who performs the surgery. 

I will be lobbying the head of midwifery, and who ever else I need to, to get support.  All I am asking from the hospital is that they have a team of midwives on a standby list and that if ttts is diagnosed again that one of the midwives can travel with the mother to hand over safely to the other hospital. 

I was told on Wednesday that it is a matter of cost - I intend to do some fundraising  and hold awareness events also so that ttts is recognised.  We were also told that the consultant had made a mistake and didn't take the time to check if our twins were identical or non-identical - ttts only happens in identical twin pregnancies.  We had asked him to check during our 15 week scan - he failed to do all the relevant checks - if he had done the relevant checks then ttt would have been diagnosed sooner as I was showing all the early signs of it at that scan.  Who knows - then maybe our sons would have had a better chance.  Because of the consultants incompetence we lost our sons as ttts was so far advanced with me.  I rang the maternity unit so many times with the signs of ttts (painful walking, large for dates)  - because we were told our twins were non-id and the midvives on the phone told me to take two paracelamol and go to bed I was no wiser to the signs of ttts.  This needs to stop - no more mothers should be over looked.

Sorry, I have gone on a bit but I hope you get where I am coming from.  If any of you have ever held any fundraising events can you let me know how you went about it and how it went.

This is a first for me but I don't want another family going through the ignorance that we suffered...

thanks for listening,

Karen xxx

[louise - Jorja's Mommy]

Hi Karen,

I think what you are planning to do is fantastic, and i'm so sorry you and your sons didnt get the support you derserved. I have no idea of any fundraising although if i can be of any help then please let me know.

Louise x

[Jen]

Karen well done for feeling strong enough to be able to do something about it. Eleanor and I have been talking about the whole issue of maternity and neonatal care and something we plan to do. You may like to come along too. I will speak to you about it when I see you.

Jen

[butterflyAdam]

Karen

As Jen says well done for standing up and doing something.  Hopefully see you soon and we can see what we come up with when we put our heads together. 

Take care.

Eleanor x

[daire and odhrans mum]

Today I started the ball rolling (finally) and emailed Dr Basky who perfomed the surgery on the boys,  he will be coming to Belfast next month so I have asked to meet with him.  I have also emailed the consultant in Dublin who performed the same procedure in January on a woman from Co. Cork - she was the same gestation as I was with the boys and hers survived and are thriving...  This was done in jan, so was there really any need to put me through what they did with all that travelling?!?!

Day one of God's knows what is ahead but I've started now....wish me luck!

Karen

[louise - Jorja's Mommy]

Hi Karen,

Well done for getting the ball rolling. 

How is the fund raising going??? When you start fund rasing let me know, i may have a few things that you could raffle off.

Louise x 

[daire and odhrans mum]

On Tuesday exactly 6 months and 2 days since the boys were born sleeping I will be meeting with Dr Basky the consultant who performed the lazer and amnio surgery on me and the boys.  He will be in Belfast for a talk to the "medical profession" in the RMH.  I have asked to meet with him and he has kindly offered me half an hour of his time after his lecture. 

I don't know what way I will be when I see him again but I know I have to do this.  I don't know what I'm going to say (i'm going to write a list of questions for him on Monday evening) I am sooooo nervous about it...

I thought I'd just give you all an update.  I am really nervous as the last time I seen him he told me Dairé would be okay after his transfusion.  I have lost sleep worrying about it...

Karen 

[claire]

Karen, well done for having the inner strength to stand up and say that what happened to you was unacceptable and should never have to happen to anybody else, your boys must be so proud. I hope you get everything you want and more from Tuesdays meeting. I'll be thinking about you.
Claire x

[daire and odhrans mum]

I'm sorry for posting the update so late. 

The meeting with the surgeon Dr Basky form St Georges went well.  We discovered that Dairé died from heart failure from going from not having enough blood pumped round his system to having too much.  He said that a baby dying has only ever happened once before with him doing the type of transfusion that Dairé had.  Gavin and I were destroyed with this news. 

The following are in the process of changing:

1. A mother presented with a multiple pregnancy will now be scanned every two weeks as opposed to 4-6 for non-identicals and 2 weeks for identical

2. Basky is writing to the Clinical Governance to "recommend due to complications during traveling" that a midwife accompany a mother to his department for a safe handover

3. Instead of being sent home right after surgery Basky agreed that a mother should be kept in St Georges or patient accommodation for up to 5 days so that she can be scanned.

It's a start,  I'm just sorry it didn't come soon enough for my boys and I feel such an injustice has been done that this couldn't have been done sooner.  I just hope no mother/father has ever to face what we had to face.

Karen 

[daire and odhrans mum]

I got an email today from Dr Basky who performed the amnio and surgery on me - he said the following:

"We have changed our protocol to include a 4-5 day stay for women from distant centres (not just Belfast) and a formalized pre-discharge clinical check. We have also drafted patient guidance regarding travel, accommodation, food, as well as the patient pathway i.e what to expect at admission, in theatre and afterwards."

One thing down...!!