Thankyou for your willingness to share - I really do appreciate it - and understand that it is not easy.
Do you mind me asking if they diagnosed all the problems with your sons heart in utero or did you find out more when he was born?
In response to your question, we have two children, a son 6 (Grade 1) and a 3 year old daughter - they are currently fighting over whether it is a boy or a girl - they have no idea what is going on.
So, we have them to consider in whatever decision we make; and like you we do not live near Melbourne (rather a 4 hour drive)
I guess my big question is - did you at any time consider termination? What was the driving force behind your decision to continue your pregnancy? (a question I am sure that is hard to answer now when you look at your little boy and the joy he has no doubt brought you)
One other question - what is PM? I am new to the forum!
All but one of our son's heart defects were picked up in-utero. The only one that wasnt was not possible to see via a scan. We had the initial 20 week scan with a normal technician and then were refered to our major Children's hospital for a scan with a Pediatric Cardiologist within four days. That is what you need, not another technician but a Paed Cardiologist. Do you have private helath insurance?? If you do it means that you can have the same cardiologist and surgeon each time but if not you will still get the best person for the job - just not the same one each time. We went private and I know that helped me cope as we were able to build up very strong relationships with our care givers.
By the way RCH in Melb is the best hospital in Australasia for this surgery. People fly in from not only other states but overseas to go to RCH!
Once we had the (three hour!!) scan with our Paed Cardiologist (Dr Gavin Wheaton) he then spent the next hour talking us through what he had found, what it meant for the baby in terms of surgery and life expectancy and that yes we did need to think about termination. So my DH and I took a couple of days off work and just talked. I really wanted to at least talk about termination just to be sure we were both on the same page and being honest with each other - not trying to hide anything from the other to save an upset. So we considered it and our decision was based on the information gathered from Gavin (and there were phone calls to him as well). We decided to go ahead because while our son's life would start with surgery and need a couple in the first few years it was felt that from that point on he would have a physically limited but otherwise good quality of life. Albeit a shorter one than we had expected. So really it was about how much of an impact this would have on his life - would it mean constant pain or significant limitations or very short life etc.
All did not go to plan (sorry if this is distressing but I would have wanted someone to be honest with me) and our boy was small at birth (unrelated pregnancy complications - 3lb 10oz / 1.6kg birth wt) and his first trip to RCH resulted in not a great outcome with additional complications. That is the ONLY time I have second-guessed our decision about continuing with the preg. I was told that DS wasnt expected to live due to complications and at that point I thought that I had brought our son into the world only to go through surgery and complication and then to die. BUT he didnt.
He has had more surgery than any of us could have predicted and as I said in my previous post has not received a "cure" or in medical terms a "repair".
There are great resources available to you in Vic. Please go to the HeartKids Vic website and find out your local contact or ring the RCH and ask for Leanne Foster who is the head Social Worker attached to the cardiac ward - she often deals with families of children with HL/RHS. Also ask her for the book "There is no such thing as a silly question" it will help you a lot. You can tell her Roman's mum (from Adel) sent you!
PM means Private Message and is an icon next to my details at the top right of the panel with any message from me and I think you can also click on my name to do it??! Not good at that myself yet. Its like sending me an email instead of chatting in the public forums.
will be thinking of you over the next two weeks.... So sorry there is no one to tell you what to do either. Hope your other two kids can give you some extra strength in the coming days.......
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will be thinking of you over the next two weeks.... So sorry there is no one to tell you what to do either. Hope your other two kids can give you some extra strength in the coming days.......
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